A Mother's Day reflection: "I was blessed to be cared for by a godly mother, and when she suffers, I suffer. Moreover, when our son was born with a congenital heart defect, I bore witness to the intensity of maternal love and affection that Stennett references."

We said goodbye to our sweet and beloved son, Augustus Elliott Joubert tonight, July 20th, 2024 at 6:50 PM. What a sweet gift. He changed our lives forever. The Lord is good. He gave us so much time together.

Friends, this is a moment we've longed for & prayed for. 25 days ago, Gus received a heart transplant by the generosity of another family -- but things didn't go as planned. Our team was persistent. Our God was kind. Gus has come so far. So... we finally get to hold him again!

We've had bad news. After a successful transplant, our son's donor heart has not started beating. He will transition to ECMO (heart bypass machine) for a couple days in hopes that it begins to beat. Otherwise, he will pass away. Please pray for us all. May the Lord be glorified.

Gus had a stable night. He shed a lot of fluid overnight (kidneys doing well!) so he looks better. His nurses & doctors are impressed with his progress. His new heart continues to beat -- not yet a full, self-sufficient beat, but it's holding strong. God is so kind. Keep praying!

Friends, I am so happy to share good news: God heard our pleas for mercy and Gus passed his taper-down test from ECMO with surprising results. In the absence of full support, his heart regulated and picked up some of the slack. A simultaneous echo showed further improvement in function over last week. It was beyond what we expected. We stood in silence as he slept peacefully throughout the test. We waited, and his heart did well! Our medical team was very pleased with the results. There were smiles all around the room and a collective sigh of relief (at least if felt that way to us). There is still a long road ahead. But this was a stroke of God's kindness and mercy. We were ready to praise him with any result, but this is a Fatherly kindness that has warmed our hearts and strengthened our resolve. Thank you friends - thank you for taking up our cause and appealing to God on our behalf. He has heard our prayers and given us good news. Gus will soon have a clamp test to watch how his heart responds to the temporary suspension of ECMO. We're not out of the woods. Keep praying with us. His heart function isn't perfect yet and ECMO remains risky - but we are closer to coming off it! Tomorrow the fight continues, but today we breathe a sigh of relief and rest in God's good gifts. To God be the glory! Praise him with us! "Call upon Me in the day of trouble; I will deliver you, and you shall glorify Me.” Ps. 50:15

I woke up to a world missing someone who showed me, perhaps more than any other human being, what it meant to love and be loved. If I could love him this much as his father, how much more does my heavenly Father love me? He gave us the greatest gift in giving us our son, Gus. "If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!" Matt. 7:11 There are no more prayers to say for Gus. His fight is over. But others still have a long fight ahead of them. Please pray for other children you learn of who are on this difficult journey - other children with heart and kidney issues. Like Gus, they need help, they need hope, and they need love. Blessed be the name of the Lord.

Friends: we are so remarkably grateful to report that after hours of working hard to get Gus' blood pressure stable, Gus' heart seems to have steadied out for the time being. He will not be going back on ECMO as of right now. The Lord has done great things for us today! We remain cautiously optimistic, but God has been good to us. We are incredibly thankful for the amazing team of nurses and doctors who acted quickly and efficiently and fought for hours to give Gus this opportunity. They persisted, and God has blessed these efforts and answered our prayers. May God be glorified. Praise the Lord. Please join us in praying for his continued stability tonight. Pray also that after everything he's been through today, inflammation and infection can be avoided. His new heart is still weak, especially the right ventricle. Time is the best thing for his heart now and we are hoping for it to come into full, healthy function in the days ahead. Not out of the woods yet, but thankful for God bringing us this far! "But I have trusted in Your mercy; My heart shall rejoice in Your salvation. I will sing to the Lord, Because He has dealt bountifully with me." Psalm 13:5-6

Friends, for the moment, Gus is still with us. It's remarkable, but how much he is really with us, and how catastrophic the damage he's suffered, only time will tell. How much time? Could be minutes, hours, days. Not certain. We have a beat and a pulse. Potential internal bleeding. Not certain what level of organ damage, especially potential brain damage, he suffered. He was under CPR for over 30 minutes. When it felt like we were only doing something to him and not for him, when his pulse was gone, we let him go - two separate times - and his pulse came back on his own both times. There are no words for those moments. We are devastated. He looked so good this morning. Things shifted so quickly. We do not understand this dark providence. Still we know God is our Shepherd, and he is leading us through this valley of the shadow of death. Will update when I can. Here is a picture of him this morning - how fragile life is.

Good morning friends. Please continue to pray for us as our team continues to test the vitality of Gus' heart. Yesterday Gus' heart performed well when ECMO support was reduced. Today the plan is to have a 'clamp trial' during which ECMO support will be temporarily suspended. This test will likely take place sometime this morning (EST) and will give us an idea as to whether or not Gus will be able to come off ECMO. Ideally, the sooner we can come off on good terms, the better, as the longer he is on ECMO the greater chance of complications. God was gracious to us yesterday! We continue to thank him for the way he answered our prayers. Still, we need more, so we ask for more, and would ask you to join us. Many obstacles remain ahead of us. Please pray Gus does well or better than expected again today! We long to have him off ECMO at the right time for him. Thank you, friends.

Hello, friends. We are so pleased to report that Gus had a relatively great day today! He's sleeping now, but we've seen a lot of those sweet, piercing eyes today. We're so thankful for the progress we've seen since coming off ECMO support on Saturday. Still, big hurdles remain. After coming off of ECMO (extracorporeal membrane oxygenation) support on Saturday, Gus experienced a series of hypotensive spells driven, as we understand it, by a kind of vasoplegic shock-response. Following his first decannulation, cascading hypotension eventually put him back on ECMO support. This time -- praise the Lord -- we seemed to have pushed through the "post-pump slump." *Seemed* is a key word when talking about Gus! We had been praying for our team to have some kind of breakthrough in treating his vasoplegia. Sunday morning, in hindsight from where things sit today, it looks like that prayer was answered. As I mentioned in a previous update, vasoplegic episodes following cardiothoracic surgery are not uncommon. It can be difficult to isolate causes for this and even harder to treat. Thankfully, when his pressures were spiraling early Sunday morning, and typical interventions were failing, one of our doctors tried a less common -- though not unheard of -- treatment. From what we can see, it's proven very effective. Gus has been much more stable since then, and we've been able to wean his vasopressor agents progressively. We're thankful for the quick thinking that helped Gus stabilize. As of right now, the goal is to continue weaning his meds and keep his fluid levels balanced in preparation for chest closure. Tomorrow will hopefully be another day like today -- rest and stability. Wednesday we hope to start the process of closing up the chest from his sternotomy. Given how long its been open, it could require a gradual approach. The hope is that this could even help with his lung condition by providing more pressure in the thoracic cavity, which in turn could help the right lung expel unwanted mucus. Words cannot express how grateful we are for Gus' progress. Several weeks ago we had a new heart that wasn't beating. A little over a week ago, we were forced to go back on ECMO in less than 24 hours. At times, we weren't sure if Gus would last the night. Tonight, we're over 48 hours off of ECMO support and Gus is doing remarkably well given everything his body has been through. God has answered our pleading. In his providence, God has brought us through some very difficult moments -- but he has not failed to show his goodness and power at every turn. I've used the analogy of a rollercoaster to describe the emotional ups and downs, but we don't feel that God is any less sovereign; any less good. Looking ahead, as our team reminded us this morning, he has a long way to go. His lungs need to improve. His kidneys have taken a beating. He'll need an MRI to really know how his brain has been effected through all this. The chest closure could present a big challenge seeing that Gus is very sensitive and prone to these inflammatory vasoplegic responses. The risk of infection remains. Feeding could be a challenge. -- Yet, in the face of all these obstacles, we simply feel drawn to pray and plead all the more boldly. As always, we remain appreciative for all the love, support, kindness, generosity, and prayer that we've received. These updates started as a way to keep friends and family in the loop, and now #TeamGus has rallied on our behalf. There are no words friends. We are humbled. We also remain steadily grateful for the amazing medical team that has been supporting us all along the way. We couldn't ask for better care than the care we've received here at Norton Children's. Assuming tomorrow is another calm day, I'll provide updates as things evolve. We anticipate Wednesday being our next "big day." Another praise -- my wife and I got away for most of the day today. A first in almost three weeks and another sign of the incredible progress he's made and the great team of nurses we have. Goodnight, everyone. "The LORD is good, a stronghold in the day of trouble; he knows those who take refuge in him." Nahum 1:7

Hello friends, Today has been a fairly uneventful day. Amanda and I actually enjoyed a decent night of sleep last night because Gus was so stable. We hope for the same tonight. Tomorrow will be another big day for us! Please pray! Here's a recap and look at the day ahead: Gus received a second TPE (therapeutic plasma exchange) treatment today. As mentioned in previous updates, the current operating theory is that inflammation caused by trauma to one of Gus' lungs is responsible for the severe episodes of hypotension that put him back on ECMO support. The TPE treatments reduce inflammation markers and could set him up for a better transition off of ECMO. The good news is that he has been relatively stable the last two days since going back on ECMO. His heart function, from all appearances, may have improved, so our team is optimistic about his ability to come off of ECMO. Consequently, we will begin the trial phase again tomorrow! We will start with another low-flow trial in which they will be looking for good heart function and good blood pressures. If he does well with that, we could attempt another clamp trial to temporarily suspend ECMO support. Amanda and I are nervous given what happened last time -- but he can't stay on ECMO indefinitely. We are relying on our team to move forward as Gus permits. Unfortunately, we received some discouraging news this morning from a neurological standpoint. Gus experienced more seizures overnight. They have been monitoring him constantly and they've been able to treat his seizures effectively. An ultrasound revealed that he suffered additional brain damage over the last few days. What kind of damage it is or how bad it is cannot be determined without an MRI -- which cannot be conducted until he is off ECMO. On a positive note, while he's been under a lot of sedation the last two days, when he has woken up (like he did this evening) we've seen good motor function along with some of his typical "Gus-isms." For that, we are thankful. The lung damage believed to have contributed to his inflammatory hypotension has not improved -- which is not surprising. Lungs cant take weeks or months to heal. The main concern was reducing the inflammation caused by the lung damage. His TPE treatments should have helped with this. The hope is that we will not see the same issues with hypotension when he comes off ECMO -- assuming his heart function remains as good as it has been. For those who have been praying for us, please pray the tomorrow goes smoothly; that his heart performs well during his ECMO trials. Pray that it is clear to our team how we should progress -- as this is obviously a very sensitive moment. We don't want to stay on ECMO longer than necessary, and his heart is showing promising signs that it is ready to do its job without support. Pray that we can avoid complications during the trials and progress in a more controlled environment. If we can get off ECMO with Gus in a stable condition, we can address other issues (like his lungs and brain). In the mean time, we are glad to report that (as of tonight) none of his other organs are showing signs of failure beyond the injuries I've mentions. Kidneys and liver are doing good! Given what happened the other day, Amanda and I are very trepidatious going into tomorrow, but God has given us peace, and we are comfortable following the lead of our medical team. We continue to be extremely grateful for all our doctors and nurses. Pray for us that we might have continued peace and entrust our son into God's hands. It remains our sincere desire that God should be glorified and Christ magnified in the midst of this difficulty. Thank you so much for praying with us and following our story. It's virtually impossible to respond to all of you, but we see and are encouraged by all those who have joined with us in pleading for our son. God has answered many prayers and we look forward to seeing how he will use this situation for his glory and our good. Here's a sweet picture from several days ago:

Update on Gus: today has been a relatively calm day. He's awake more! He did well overnight & his meds were weaned further. Tried restarting feeds today, but he's struggled to keep it down. We're trying to draw off more fluid to prepare for chest closure in the next few days.

Our little guy is still with us. How much longer we have with him is unclear right now. The goal for now is to keep things as ideal as possible for him. Neurologically, the forecast is grim. We are praying and pleading for a miracle. He belongs to the Lord. May his will be done.

We took a big step in a positive direction today: after 77 days of being intubated, Gus was successfully extubated. In it's place he's using a RAM cannula for support. Our amazing team of practitioners, nurses, and RTs got us to this point, and we're grateful for them. He's doing well after a busy day. Hoping for a peaceful night. We're praying he continues to grow his respiratory capacity to the point where he can breathe on his own. God is good and he has done so much for us. Psalm 66:20 - "Blessed be God, Who has not turned away my prayer, Nor His mercy from me!"

Friends, though not without natural anxiety in the face of this hardship, it is from faithful anticipation & not just fear that we keep asking God for more: Gus has pulsivity, yes - but echo shows poor function remains & time is limited. Pray with us for a functioning heart!

Hello friends. Here's the latest update on Gus. At the head of the update: TOMORROW IS A BIG DAY. I know "big day" feels overused at this point, but tomorrow really is the day we've been working towards over the last two weeks. We would greatly appreciate prayer for tomorrow. Why? Because tomorrow we are clamping again. This is the test - risky in itself - where our team evaluates Gus' ability to come off ECMO. We were able to plan this step because we successfully drew off fluids over the last four days and improved the condition of Gus' right lung after seven bronchoscopies. The persistence has paid off and God has blessed us with a relatively complication-free use of ECMO support over the last week. So tomorrow morning, between roughly 8-9 am (EST), our team plans to suspend ECMO support periodically to see if Gus' heart and lungs can take over. Another echo today confirmed that his heart function is good, despite being underfilled (meaning low volume -- which can be an effect of being on the ECMO circuit and addressed as needed). Properly supported, his heart should have what it needs to take over. Our family greatly appreciates all the support you've offered us. Through tonight and tomorrow morning we invite you to join us in earnest prayer that Gus' ECMO trial would be a success and he would be able to safely come off support (a process which would require a minor surgery). Pray too for the team that will be "all hands on deck" tomorrow. We anticipate challenges, and stabilizing him could be tricky -- but the hope is that the right support will help his heart, lungs, and vascular system take over for the ECMO circuit. It's our hope that over the weekend he will be off of ECMO and stable. We've made a lot of awesome progress in order to get to this point. For that we are incredibly grateful. Please join us in making these bold requests before the throne of grace. Further updates and urgent prayer requests will be made whenever I am able to as things progress tomorrow. Thanks to all. God is good.

Saying our goodbyes.

Gus' bronchoscopy went well, got a huge mucus plug out of the right branch. Had a little bleeding, which isn't uncommon, so they stopped -- but the team has been suctioning his breathing tube regularly and the last one looked clear of blood so we should be okay there. They will put him on a saline-chloride treatment to help break it up further and may do another bronchoscopy tomorrow or Sunday depending on X-rays results. Some residual bleeding in the chest since they opened his chest patch up prior to the ECMO trial. Hoping that's not going to be an issue. Keep praying with us friends. Long day. Some answers. More obstacles. We are tired, but God has been gracious. Thankful for our team. Here's another picture from the last time I got to hold him:

Hello, friends. Gus is doing relatively well and remains stable. He began chest physiotherapy (CPT) today to facilitate the recovery of his right lung. Our team is also concerned about his kidneys and fluid balance. He's also experienced some lower blood pressure today, mostly this evening, which may be part of a struggle to find the right balance following his chest closure. Also of concern: we have a leaky drainage site around one of his chest tubes. It's likely a result of the significant change in his body shape due to all the fluid he's shed. It's not immediately concerning, but it adds another complication, and we want to avoid infections. Please pray for Gus and our team as they work to treat his lungs, kidney numbers, fluid balance, and -- especially -- blood pressure. Lots to navigate! Thankful for our team and thankful for all of God's kind providences this last week. Thank you for praying for us and with us.

Hello friends. Here is our obituary for Gus. Hard to believe it's been a week since we handed him over for what felt like another routine procedure. Thanks for all your support and encouragement. bossefh.com/obituaries/Augus… **In Grateful and Loving Memory of Augustus Elliott Joubert** December 4, 2023 - July 20, 2024 Augustus 'Gus' Elliott Joubert, 229 days old, of Louisville, Kentucky, passed away peacefully on July 20, 2024, in the arms of his loving parents, having been in the company of family and friends throughout the day. Born on December 4, 2023, in Louisville to Mark and Amanda Joubert, Gus was a beloved son, grandson, nephew, and cousin. Gus' life inspired people all over the world. Born with a severe congenital heart defect, Gus received a heart transplant on January 16, 2024. Despite the coordinated efforts of his medical team, his new heart did not start beating, sparking a viral request for urgent prayer that quickly garnered the attention and prayers of thousands. Supported by ECMO, and to the surprise of many, his heart began to beat the following day, marking the beginning of what would become a long and arduous struggle toward recovery. Gus' story highlights the value of each life, the fatherly goodness of God, the efficacy and solidarity of prayer, the gracious gift that each day with our loved ones represents, and the transcendent and far-reaching impact of love. Gus knew nothing but love from his parents, family, friends, and the team at Norton Children's Hospital who cared for him every day of his life. He loved attention, smiled at his loved ones and caregivers, and made remarkable progress before succumbing to complications following a medical procedure. He will be missed by all those who were blessed to know him. Free of leads and lines, he is now in that place the theologian Jonathan Edwards called a "world of love." By grace, he rests in the presence of that One who is the Fount of all Beauty. Gus is survived by his parents, Mark and Amanda of Louisville, Kentucky; his paternal grandparents, Norman and Sandra of Orleans, Vermont; his maternal grandparents, Scott and Monica of Newport, Vermont; his maternal great-grandmother, Denise of Newport, Vermont; his aunts Melanie and Anna of Louisville, Kentucky; Melissa (Justin) and Michelle (Roland) of Dayton, Ohio; Laura (Zeke) of Sandown, New Hampshire; Meagan of Derby Line, Vermont; Sara (Craig) of Newport, Vermont; and Michaela (Joe) of Lowell, Vermont; as well as numerous cousins. He was preceded in death by his cousin, Philip James McNamara. A celebration of Gus' life will be held on Thursday, August 1, at 10:00 AM at the Reformed Baptist Church, 3400 Wilderness Trail, Louisville, KY. A brief graveside service at Cave Hill Cemetery will follow. Visiting hours will be held on Wednesday, July 31, from 5-8 PM at Bosse Funeral Home, 1355 Ellison Ave, Louisville, KY. In lieu of flowers, donations can be made to Norton Children's Hospital Foundation - Brave Hearts (an organization supporting families of children with congenital heart defects) or the Joubert family's GoFundMe. Those wishing to send cards of sympathy may address them to: C/O Mark & Amanda Reformed Baptist Church of Louisville P.O. Box 991257 Louisville, KY 40269 The family would like to extend their deepest thanks and appreciation to the staff at Norton Children's Hospital for the compassionate care they provided throughout Gus' 229 days of life. Each day with Gus was a gift and their hard work and loving dedication made each day possible. Norton Children's Hospital, was, in the end, Gus' home. Gus' family also wishes to extend their heartfelt gratitude to their friends at the Reformed Baptist Church of Louisville for their steady support over the last year. Truly, they have continued to fulfill the law of Christ in bearing this precious burden alongside Gus' family. Above all, the family will remain forever grateful to those who made the compassionate choice to donate the heart of their own child, granting Gus six more months of life. "I will give thanks to you, Lord, with all my heart; I will tell of all the marvelous things you have done." Psalm 9:1

Hello friends. Gus is off ECMO support and stable. We are so thankful for this huge step, but we are also cautiously optimistic given how unpredictable Gus has been in the past! The goal is to keep him stable and slowly remove support. We're not out of the woods. Keep praying! He's still on ventilator support, a pacemaker, and a myriad of meds to keep his blood pressure up. He's had two episodes of severe hypotension today, but both were manageable. He seems to be holding fluids and vascular pressure better than before. Now we wait and see. Amanda and I still feel very apprehensive. Today's events feel like progress: the reward of diligent efforts on the part of our team; answered prayers for the countless people who have been praying with us; most of all, the gracious gift and kindness of our Father. Still, we know we need to keep praying and pleading because we have a long way to go yet. This evening and overnight, our prayer is for stability. He's notorious for becoming hypotensive from vasoplegia. Please pray with us this would not be the case tonight, but that we'd chart a new course towards recovery from this point forward. Future goals will involve closing his chest, continuing to improve the condition of his lungs, and weaning him from meds as his blood pressures will allow. Thank you for praying with us in all this. God is good. Glory and praise to the Lord.

Hello, friends! Gus did well throughout his chest closure. He came out stable with acceptable blood pressure. Now, as he's adjusting, we're praying his blood pressure remains within an acceptable range and his lungs are able to function well under these new conditions. Overall, we feel good about this progress, but trepidatious as we wait to see how things settle out. He's still adjusting. There's continued concern over his right lung, part of which remains collapsed. Now that his chest is closed, new therapies will become available to help with this. In the meantime, his oxygen saturation needs to remain stable, and his body's ability to shed C02 needs to keep pace. Please pray that his body is able to ride out this big adjustment and that his blood pressure and oxygen saturation remain stable. We are so thankful to make this step -- but much remains to be done. We continue to come boldly before the throne of grace in our time of need. God is good. Glory to God.

Oh, how my heart aches. But I am thankful. I am thankful for 229 days. I am thankful that we got to meet each other, hold each other, look at each other, and even smile at each other. I will never forget that smile. It was one of the most beautiful things I've ever seen.

Hello everyone! Latest update on our Gus: This has been a long day already, and it's only 10:45 AM as I write this. If you've been following our story closely, our son Gus experienced complications yesterday which took him off ECMO abruptly. Thankfully, at the time, it was an option to do so because his new heart was regaining momentum. What followed was a long, touch-and-go afternoon of trying to maintain his blood pressure. Regardless of what our team did, and they tried everything, it continued to fall precipitously. For some uncertain reason, he stabilized last night. We enjoyed a few hours of relief, but by 3 am this morning, his situation was deteriorating again. This time, it brought him to edge of death, and we were forced to put him back on ECMO. Thankfully our team acted quickly and he was brought back on ECMO successfully. He is now mostly stable, though they are trying to find a good balance with his fluids. What caused this stubborn blood pressure issue remains uncertain. However, our team has a good operating theory. It is now believed that the emergency that forced him off - a clot that formed during the ECMO clamp trial (which is a known risk to evaluating whether or not a patient can come off) - while not entering Gus in its entirety, may have sent "micro-clots" into his body. Based on x-rays, it looks like his right lung took the brunt of it. Our team believes the damage his right lung has sustained led to an inflammatory response that has effected how his vascular system retains fluids, and therefore, how his body maintains good pressures. The only option he had this morning was to go back on ECMO in hopes that a few more days will offer him the stability his lungs need to heal. They will do treatments to remove inflammatory markers from his blood in the meantime. Thankfully -- and we are so relieved to be able to report this -- his other organs seem to still be in good shape. Liver, kidneys, and brain do not seem to have sustained any significant damage from these periods of hypotension. Praise God! The other good news is that it does not appear to have significantly injured his new heart, which has retained much of the progress it made up until yesterday. In theory, if ECMO provides the buffer of time needed, he should be able to come off again in a more controlled manner. Still, being on ECMO again presents significant risks and our team will have to balance caring for a damaged lung while trying to avoid clotting or bleeding throughout his body. Our team has an incredible balancing act on their hands, and they have done so well -- we ask that you all pray for them as they work so hard to keep Gus alive. They have done so much so well -- we are so grateful for each doctor, practitioner, and nurse. So here's where we sit: take several days more on ECMO to allow the lung to recover and reduce inflammation while sustaining good pressures, monitoring him neurologically, and protecting his other organs. Please pray with us for God to give our doctors wisdom. Pray that Gus' lung would recover; that this time on ECMO would be free from complications an provide the time he needs to finally come free and soar. Amanda and I are exhausted and burnt out from this. Please pray for all of us as we continue to go through this with Gus. We are at a point where we are timid to hope and tired from the up and down swings. Truly, we are at the end of ourselves. We feel only God can, if he wills, preserve Gus' life. We are impotent. But we can pray, so with weakness, we continue to offer simple, tired prayers: Lord, please help. Lord, please spare our son. Lord, please have mercy. Again, the Lord supplies language for that painful paradox at the intersection of beauty and suffering: "It is good that one should hope and wait quietly for the salvation of the LORD…Though he causes grief, yet he will show compassion according to the multitude of his mercies." Lam. 3:26, 32 Thank you, everyone.

Hello friends. I apologize for the delayed update. The last week has been a whirlwind of adjustments and changes - mostly good. Gus is doing really well. His meds have been weaned considerably, his second chest tube removed (woohoo!), and he is breathing room air! The kidneys remain a major obstacle to his progression. His renal scan (to follow up on that for you all) verified that his kidneys were indeed damaged, but they are still perfusing blood, which was encouraging. It means the possibility for recovery is still there. However, his urine output is still minimal, and the kidneys haven't responded to diuretics. Our nephrology team is optimistic, but for now all we can do is give the kidneys the ideal conditions for recovery, wait, and pray. He's still on peritoneal dialysis with hourly passes. Ideally, we'd like to see the kidneys recover to the point where such frequent dialysis is not needed - or not needed at all. 137 days with Gus at the hospital. God has been kind to us. Every day with Gus is a gift. Thank you for continuing to follow our story and pray for us.

5:00 update: Keep praying, friends. Feels as if God is granting our pleas: the latest report just brought to us is that Gus is hanging stable. They were able to drain some fluid from his abdomen. Our lead surgeon literally is just standing there with Gus' chest open waiting to make sure he doesn't plummet again. They're giving him until 5:30 (unless he crashes before that) at which point we'll abandon ECMO. He's so close, friends. Pray for this little heart to stabilize! --- Immediate prayer request: Hello everyone. After a wild afternoon, and unexpectedly going off ECMO, and hours of failed attempts to stabilize him, in typical Gus fashion, Gus actually started to look more stable right before they were looking to return him to ECMO! He's apparently been stable(er) for the last 30 minutes. They will give him 30 more minutes in hopes he maintains this improved blood pressure. Otherwise, if he destabilizes again, he'll go back on ECMO. That's not necessarily the end of the line, but we eagerly want to avoid it if God wills it so. So please pray and plead with us while we wait for them to decide! Praying Gus surprises everyone to the glory of God. We'll know more around 5 pm. Sooner if he is forced to go back on.

Missing my buddy today. Thanks for making me a dad, Gus. Happy Father's Day to all the bereaved fathers out there!

UPDATE ON GUS: Gus was successfully put back on ECMO, though we don't know what the ramifications of this whole episode will be. Organ or brain damage is very possible. He'll need evaluation once stabilized. Please pray for us as we wait and as we may face difficult decisions today or in the days ahead. This has been an absolute rollercoaster. Pray for us as we are utterly exhausted. Thanks to all those who have followed our journey through the ups and downs of the last few days. Lord, give us peace. We are resting in your everlasting arms. Here's a picture of Gus from better days:

We left Gus a little while ago. Prepping for the procedure now. The goal is to clean out the thoracic cavity, close the sternum, place a new central line, deploy a wound vac over the site for healing, & hope that his heart, lungs, & blood pressure tolerate it all. Wait & pray.

Hello, friends. Gus remains stable, and we are grateful for the relative reprieve provided by two slow days in a row. We are thankful to report that the lower lobe of Gus' right lung has improved following yesterday's bronchoscopy. We had the best x-ray we've had in days this morning. He's about to begin yet another bronchoscopy as I write this. We'd appreciate your prayers that this procedure will help dislodge the mucus plugs impeding airflow in the middle and upper portions of the right lung. Otherwise, we are watching and waiting while Gus sheds excess fluid accumulated during Monday's procedures. He's been on a form of dialysis working in conjunction with the ECMO circuit to slowly remove fluid. So far, so good. From what we can tell, heart function also remains stable. For that, we remain immensely grateful. Two weeks ago today we had the longest day of our lives as we waited for his otherwise motionless heart to recover. In many ways, we've come a long way since then, but we have a long way to go. We're not out of the woods yet. Getting him off ECMO remains a priority, and improved lung function is a necessary step in that direction. Thankful for all that God has done. Praying for his continued comfort and care. Thank you to all who continue to pray and offer their encouragement to our family.

Friends, we're going into the night uncertain as to what it may bring. It is likely that internal bleeding from the cath procedure is the culprit. Unfortunately, all the trauma has caused significant coagulopathy, and so for now, the best option is to replace blood and clotting factors, pray for some improvement and wait for greater stability - at which point we can be more aggressive. Please pray for Gus' comfort, for his bleeding to stop, for solutions to become evident, and for complications to be minimal. We still don't know the real extent of the damage. Please pray for us to have strength for Gus and that we'd have wisdom to make hard decisions, trusting God with the outcomes. Pray for our shattered hearts. Pray for our team as they work tirelessly through the night to keep Gus alive. Thank you friends.

Hello, friends. Here is an update on our son, Gus: Yesterday was a long, hard day. Before noon, Gus had his chest closed (the sternotomy from his heart transplant) and the cannulas for ECMO moved to his neck. This was followed by a productive bronchoscopy that removed several mucus plugs from his right lung. However, shortly thereafter, we took a hard turn. Gus became increasing edematous, and as a result, we had to reopen his chest. This was followed by a period of chasing blood pressure and pushing fluids. Unable to resolve the issue, our surgeon identified a potential cause of his instability: the venous cannula was not circulating properly. This led to the third operation of the day. This cannula was put back in his chest, which helped resolve the imbalance and provide stability. Everything felt very touch-and-go through the evening. Because of the short intervals between these procedures, we didn't see Gus for almost 12 hours. When we heard he had been stabilized, we crashed and slept. By the time we saw him this morning, he had stabilized and his swelling had come down. We are thankful for this resolution, although it felt like we took several steps backwards and landed in the same place we were several days ago. However, we acknowledge that situations such as ours often follow these trajectories. Our team remains confident that Gus is still in a position from which he can recover. For that to happen, several things need to be achieved (or not continue): First, his right lung needs to recover, at least to the point where he no longer needs ECMO. We are at the point where ECMO, while lifesaving, is adding complications. Another bronchoscopy this afternoon successfully removed another significant mucus plug. Please pray his lung will recover as our team continues to treat it. This will allow us to come off of ECMO support before further complications are added. Second, we are praying for our team as they navigate his vasoplegia. This systemic lack of vascular resistance causes cascading episodes of hypotension. It doesn't appear to be directly tied to his heart function. It may be an inflammatory response tied to his lung condition or even the use of ECMO -- a vicious catch-22. Pray for wisdom and resolution ahead of coming off of ECMO successfully. Third, we continue to pray that his heart function would maintain itself and improve. Fourth, pray his dialysis treatment is successful so long as it is able to continue. He is currently on a circuit intended to aid his kidneys in shedding all the excess fluids. It may entail risks, but it can also help with swelling. Finally, pray that God would protect Gus from additional ECMO complications. We've been on ECMO for a while now, and the risk of complications from it is ever present. We are thankful that his circuit looks good right now. Pray with us for this to continue. As always, thank you to all those who are reading, following, and praying over these updates. Your support, prayers, and encouragements are fortifying. We are grateful for all the support as we ride this rollercoaster with Gus. Admittedly, we are tired -- especially in emotional terms. The ups and downs are beyond wearisome. Pray we are able to continue to support Gus and each other well. Still, we remain thankful to God for his grace. We continue to plead boldly before his throne. We are thankful for our medical team, working so hard to help Gus recover. They are interactive, communicative, and supportive. We have receive many expressions of God's kindness through others even today. There is much to be thankful for amidst the hard blows of difficult providence. God is good. Christ is precious. "My help comes from the Lord, who made heaven and earth." Psalm 121:2 --- Picture from several days ago:

Today we are feeling a bit raw. Today was the day we were originally scheduled for discharge. We were so close to coming home - less than a week away. Gus fought long and hard. We fought long and hard with him and for him. His medical team worked hard every day. Sadly, it was not to be. Grief and gratitude. Those are the chief sentiments that remain in the wake of his 229 days of life. Grief because he is missed. Grief because of all the 'nevers' and 'never agains' that intrude, often uninvited, into our minds. Grief because his presence is missed. Grief because my heart longs to lock eyes with him one more time. Grief because I want to make him smile once more. Grief because the hospital became a second home - and we actually miss being there. Grief because we have so much love left to give to him. It feels like our love was robbed of a test - we were ready to go with him wherever he needed us to go, to do whatever he needed us to do. This time, we could not follow him. At least not yet. Gratitude because Gus should have died multiple times. He could've died in the womb. He could've died in childbirth. He could've died in his first cath procedure - or his second one (that got really hairy). He could've died waiting for a heart transplant. He could've died when his heart transplant initially failed. He could've died when he had to come off ECMO emergently. He could've died when we lost a pulse and had to get him on ECMO a second time. He could've died when his lungs needed seven bronchoscopies. He could've died when his body was dumping chyle. He could've died when his kidneys failed. He could've died - twice - when he was getting CPR and instead, we got another day to say goodbye. The abundance of what feel like miracles is not undone by his leaving us now. We got 229 days that many others, and certainly most people throughout history, did not get. Each one of them was a gift. I'm sorry I couldn't bring you home today, buddy. Thanks for changing my life forever. Thank you, Father, for the gift of our son.

Wednesday night update on Gus: Gus is still stable. We've continued to wean his vasopressors. His blood pressures have been holding steady, a sign that his vasoplegia has resolved for the time being. We're continuing to work fluid off so it's easier to close his sternotomy. Because Gus' chest has been open for so long, it's going to be difficult to close it up. It will probably require a gradual approach. The concern remains that his body has been remarkably sensitive to interventions and procedures in the past. We're hoping that closing the chest won't impede the recovery of his heart and lungs, or restart a severe vasoplegic response. His heart function remains about the same: generally good function but underfilled, with thick, stiff walls in the left ventricle -- a pathology akin to hypertrophic cardiomyopathy. The hope is that, over time, with the withdrawal of various medications, his heart will continue to recover. Pray for our team as they strategize the best next steps for Gus. It's also been difficult to get good lines on Gus -- he's notoriously difficult when it comes to the placement of IVs or PICC lines, which makes it more challenging to manage all his treatments. Pray that, when we need it, our team is able to get the lines they need without complications. Overall, we're thankful for these stable days after weeks of instability and ECMO support. God has done amazing things on our behalf. Our team has made great progress. Still, being off of ECMO is just one of several crucial steps before us. As I keep saying, we're not out of the woods, and the risk of complications or setbacks still looms heavy. Please continue to pray for all of us. We're all tired, and even under the most ideal circumstances, it could be 4-6 weeks before Gus is at a place where he can go home (though even saying that is remarkable given where we were two-three weeks ago). God continues to sustain us. We're well supported by our team, our friends, our family, our church, and by the prayers of so many on our behalf. Praise God from whom all blessings flow. "As for God, His way is perfect; The word of the Lord is proven; He is a shield to all who trust in Him. For who is God, except the Lord? And who is a rock, except our God?" Psalms 18:30-31 The picture: Gus had a bit of "spa" time today -- mom continues to work on getting all the goo out of his hair from a past EEG!

The last 24 hours have been, by far, the hardest & most painful of our lives. With great angst, we plead for a heartbeat. Time has not run out, but it is short. Only our Great Shepherd can lead us through this valley of the shadow of death. We wait on him. May he be glorified.

Hello, friends. We've been blessed with another stable day while our team works to remove excess fluid and support Gus' right lung. We're thankful for the progress we've had in both areas. We're requesting prayer ahead of our goals to come off ECMO as early as this weekend. Here's the update: Overall, Gus had another stable night and a restful day. A dialysis unit working alongside his ECMO circuit has been drawing off excess fluid accumulated during the events of Monday. His ECMO circuit hasn't faced any significant complications, and Gus has done well with the dialysis. He looks much more himself than he did Monday night. We're happy to report that his bronchoscopy today (the 6th one in the last week) dislodged some significant mucus buildup in the upper right lobe. This is an answer to prayer and a satisfying result for the pulmonology team that has been working persistently to open up the right lung. The X-ray this morning showed that we maintained progress made yesterday, and we would now ask you all to pray the X-ray tomorrow morning shows significant improvement based on the bronchoscopy he had today. Opening up this lung is a crucial step towards coming off ECMO support. Right now our team is trying to determine what the next steps will be as we work towards coming off of ECMO. The goal, ideally, is to come off ECMO this weekend. Whether we do any other procedures before that, or when we will begin to test his dependency on ECMO again is yet to be determined. We would appreciate prayers for our team as they strategize. The biggest prayer request we have now is that the Lord would get us to the point where Gus can come off ECMO. Again, we pray tomorrow's X-ray reflects the success we saw during today's bronchoscopy. We're continually thankful for all the wonderful doctors, practitioners, and nurses caring for our family here at Norton's. We're thankful for all the support, encouragement, and prayer we've received from all of you. We're grateful for all the ways in which our Father has sustained us. We're emboldened by Christ our mediator to come boldly before the throne of grace to receive help in our time of need. We're comforted by the consolation of the Spirit as he uses the prayers of God's people and the promises of the Word to fortify our hearts. The saga continues...

Gus is making strides. He's off IV sedation. His a-line was removed & he's getting cuff pressures now. He got to go outside with Mom to the hospital garden today - only his second outing! Please pray for a kidney imaging test planned for tomorrow. Renal function is still poor.

Hello friends. Here's an update on Gus: Today is another big day for us. Gus will have his chest closed up shortly. This involves closing his sternotomy and repositioning the cannulas for the ECMO circuit to his neck. We are once again waiting and praying. Please pray for this operation to go well. Gus is so fragile right now. We are dealing with multiple complications at this point, despite the improvement in his heart function this last week: his right lung, unfortunately, did not look better on this morning's X-ray, so another bronchoscopy will be needed; he has struggled with bleeding over the last 18 hours or so, which is not surprising given he's on ECMO, but that can become very serious very quickly; his vascular issues persist, making it hard to keep up his BP and manage fluids; we were unable to get a central line repositioned ahead of losing the one in his neck to cannulas here shortly, so our nurses are having a difficult time distributing medications. Many such things weigh on our minds and the minds of our medical team who have been working diligently to keep him stabilized. Please join us as we wait and pray for our Gus as he undergoes this chest closure. We are admittedly tired and weak. Pray too for the Lord to continue to sustain us as he has. We are trusting the Lord, that he is good and does good (Ps. 119:68). His grace is sufficient. May he have the glory today.

Not much to report tonight (which feels like a good thing). Gus is holding steady. Our team is considering Saturday for chest closure. We appreciate prayer as we approach this step, that Gus would remain stable and his heart and lungs would tolerate the closure.

Wednesday night update on Gus: Gus is fairly stable right now. Three areas of prayer and concern for the night: First and most important: stability and no complications while on ECMO. He needs time (several days at least) to heal and recuperate before we would try to come off again. Complications like clotting and bleeding are always a threat while on ECMO. Second, he's had some seizure activity today which they've managed with meds. This was discouraging but not surprising. These are not necessarily from increased damage to the brain (ultrasound showed no significant changes after all the chaos of the last 36 hours). They could be from parts of his brain damaged in earlier ischemic episodes. We can't know the whole of it until he's off ECMO and can have an MRI. Please pray these can be managed effectively. Third, and the current theory as to why we are back on ECMO: damage to his right lung needs to heal. Being on ECMO provides that opportunity. Our team believes that the lung damage may be the cause of inflammation behind Gus' severe hypotension overnight. Please pray for his lungs to recover and inflammation to reduce. These are big obstacles, but we continue to plead with our Heavenly Father for intervention and healing. We pray Gus remains stable overnight and that we can all get some rest. Time is of the essence. Thank you to all who have prayed for us. Please continue to intercede.

We may be close to saying goodbye for a final time unless something changes dramatically. Every moment is a gift. Hug your own tight.

Hello, everyone! Tomorrow's looking to be our next "big day" -- assuming nothing too exciting happens overnight. Overall, Gus had a pretty good day today. We are attempting a chest closure tomorrow. We're scheduled for 8:30 in the morning. Please pray it goes well and his heart and lungs tolerate it. His pressures were a little squirrely this afternoon. It's not that they're plummeting like they have during previous episodes of vasoplegia, but he's been wanting to sit at lower pressures than our team is comfortable with. Upping his hemoglobin seems to have helped. Please pray that his blood pressure would even out and sustain overnight and they wouldn't have to do much to intervene. Otherwise he's had pleasant moments of being awake as well as some good rest today in preparation for tomorrow. We'll have more updates tomorrow morning. Thanks for your prayers!

One of the most beautiful things I've ever witnessed: seeing these two together, mother and son.

Hello, friends. Gus is doing well. He's coming off sedation from the cath procedure & slowly waking up. Things were stable in the lab. It was hard to get access, but the team got in, successfully ballooned the SVC & got helpful data on the heart. Unable to do the biopsy today though. For now it's a matter of "wait and see" on the chest tube drainage. Hopefully ballooning the SVC will help reduce the buildup of fluid. We'll know more by tomorrow. Thanks for praying with us today! Please pray that, overnight, he'll recover well from the cath procedure, remain stable, and that we'll see some positive changes from the work we did today. Our CICU team did an amazing job today. A TON of work goes into handing Gus off to the cath team and then receiving him back. The cath team and anesthesia team kept him stable and got a lot done. Very thankful, and praising the Lord for them all. Now we hope for a stable night!

Hey, friends. Gus did well on the chest closure today. He's sutured up. His chest was opened on January 16th -- 31 days ago. While he's done well today, some technical issues with his lines have made for a difficult day in other ways. He needs another line placed tonight. Please pray we can have better success with this as it makes it very challenging to manage meds when he doesn't have good access. Praising the Lord for bringing Gus through another procedure. Thank you, friends.

Going home has been so incredibly painful. The grief comes in unrelenting waves. If the kind of wounds we had were visible, we'd look like we'd narrowly survived an explosion - but these wounds don't show on the outside. It hurts so much because he was such a gift. "My soul is bereft of peace; I have forgotten what happiness is; so I say, “My endurance has perished; so has my hope from the Lord.” Remember my affliction and my wanderings, the wormwood and the gall! My soul continually remembers it and is bowed down within me. But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” Lamentations 3:17-24

Brief Gus update: Gus is about to have ANOTHER bronchoscopy. His upper right lung is stubborn. We really need this to clear out. Pray our team makes progress. They are up against increased inflammation & bleed risk. Need that right lung open! I'll have a longer update later.

BIG GUS UPDATE: Hello friends. An update is long overdue. This update is good, and we hope it offers some encouragement in these anxious times. Over the last week, Gus was able to successfully transition from the CICU to the PCU. We are probably only weeks from going home...what a thought! The Lord has been so kind in bringing us this far! Gus is doing well, though he is still struggling to put on weight. He's had some bumps, but overall his move to the PCU this last week has been positive. Lots of smiles today supply the evidence - Gus approves. Our team (of amazing people) has been working on nutrition and fluid balance. Because Gus was diagnosed with end stage renal disease (ESRD) and his kidney function is so poor (virtually non-existent), balancing his needs on peritoneal dialysis (PD) is an ongoing challenge. It's going well. He's currently on 12 hours of dialysis every night. As much as we are excited to be going home, we are also feeling the weight of the challenges ahead. Going home after a heart transplant was a challenge we were mentally prepared for. Going home with the demands of caring for someone with ESRD is another story. White cardiac stuff is more dramatic and acute, the kidney stuff is more demanding and taxing. The way I've been putting it is, we are not simply taking Gus home from the hospital, we are taking the hospital home with Gus - without all the amazing help. Add to that the fact that nearly eight months in, we are mentally, emotionally, and physically drained - and it's daunting. The demands on us are increasing at a time when we are most feeling the exhausting of the last eight months. Not complaining - God has been gracious - just being real. In a way, we are coming to the end of one stage of treatment and embarking on a new one. This next year we will be monitoring his heart health closely and maintaining his kidney care in hopes that he will be able to get a kidney transplant. We are working to prepare our home and looking at all the things we'll need to get for his dialysis care. We are working on building our support team. We will need the help and respite to run this marathon. We want to give Gus the best care so he has the best chance of long term success. Thank you for all of you who have followed our story and prayed earnestly for us these last seven months. We will need prayer as we enter this new phase of life built around dialysis and kidney care. We will continue to provide updates. We're not going home cured - we're going home to manage serious illness. I'll probably start a Caring Bridge or something like that to centralize updates. Again, much thanks, friends. "I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done." Psalm 9:1

Packed up and strapped in! Departing in a bit.

About to send him off. He has no clue what he's about to go through. Thankful for that. He's going into this surgery in great shape.

Okay friends -- Gus is resting now. He had another stable night. He's doing well enough that our team wasn't concerned with a prolonged low flow trial this morning, so some time between noon & 1 pm we will have another clamp trial which involves suspending ECMO support temporarily. Please pray. Going into it, we are well acquainted with the risks based on what happened last time. Slight adjustments may help avoid a repeat emergency. However, we are still concerned with the condition of his right lung which hasn't improved. The hope is that we've addressed the inflammation in order to avoid hypotension. However, stabilizing the lungs to provide oxygen to his body may be the next challenge. Please pray for God to see us through this afternoon and that Gus' heart will be able to support him and his lungs not be too critical to provide the oxygen he needs. Pray for our medical team. Pray for us as we are full of apprehension going into this. We are learning to trust the Lord more. Ultimately we are all in his hands. Thank you for praying with us.

Happy 4th of July from our family to yours!

Hello, friends. Here is an update on Gus for those following our story: Gus remains stable though fragile. His heart shows slight signs of improvement. ECMO remains a helpful though risky intervention needed to give this new heart time to recover. Timing remains crucial, but his toleration of ECMO will guide our team's approach. When the time comes, perhaps in the next couple days, to test his new heart, coming off ECMO can be risky, but we have an amazing team here to guide us through that. Complications like bleeding, clotting, or damage to other tissues or organs are the biggest risks to his recovery right now. Please pray his heart function would continue to improve; that his time on ECMO would not involve further complications; that he would be comfortable and not distressed; that my wife and I would have rest and wisdom for hard days ahead; that God would be known and glorified through us in the midst of this trial. Praise God with us for his kindness thus far, but please continue to intercede with us and for us! We are unspeakably humbled by the outpouring of love and prayer and kindness from so many. We are also immensely grateful for every nurse and doctor laboring in skillful compassion to preserve his life. Aside from our deep parental hope for our son's deliverance, it is our greatest desire that Christ would be known, and loved, and praised through this difficult providence. God is good. Christ is our refuge. Ps. 34:8.

Update on Gus: Gus completed his clamp trial this morning. His blood pressure came down, but it was manageable and didn't require excessive fluids to maintain. A pacemaker was used to increase his heart rate (apparently not an uncommon measure). So now we look to come off. The OR team has been summoned. His room has been prepped. The plan is to remove him from ECMO and provide support as needed. The procedure is likely to begin within the next hour. One clear positive from the trials today: his right lung is back in the game and he didn't desat when ECMO support was suspended. Praising the Lord for the progress we made over the last week. Please pray with us as we enter this next phase -- it feels so tenuous and sensitive. God has shown himself abundantly kind and he's brought us through many great difficulties in the months since learning Gus had a CHD. If it would be his will, he can bring us through this too. We need more so we boldly step into the throne room of our Heavenly Father to ask for more -- for your namesake, O Lord, help us. I will provide updates when I can and as we receive them.

Hello, friends. Gus is doing well. Today, one of his chest tubes was removed because it has not been draining. The other one remains for now, but may be out soon. He's being weaned from sedation, which may be a challenge. Still praying for his kidneys which haven't recovered yet.

Hello, friends. Gus had a stable night and a good day today. Positively, his blood pressure has been better and his right lung is much improved. Still of concern, his kidney output has declined, he's still draining a lot from the chest, and we have a cath procedure tomorrow. Here's an overview: Most importantly, Gus is going to have a catheter procedure tomorrow. Historically (pre-transplant), cath days have been difficult days with complications. We hope tomorrow is different now that he has a new heart with better function! The concern driving the need for this procedure is twofold: I mentioned a while back that our team was concerned with blood flow through his superior vena cava (SVC). The SVC involves one of the suture points for the new heart. It's not uncommon for this area in the SVC to become stenotic. The cath team will investigate , and if necessary balloon this area to improve blood flow. In Gus' case, there are signs that this may in fact be the case (e.g.poor drainage from the upper body and increased swelling in the head when pushing fluids). Another reason for the cath procedure is the need for more accurate data. Since his new heart was placed, it has been slowly recovering. His new heart is stiff and thick. This condition can cause issues with pressure in the heart, which in turn may cause other systemic issues. The cath procedure will involve gathering more accurate data that will help our team treat Gus more effectively. Both the internal pressure of the heart and the potential SVC stenosis may be contributing to the increased chest tube output that is throwing off his fluid balance. The increased pressures can cause systemic fluid backup that is shed by the vascular system. Cloudy chest fluid drainage may also signify Chylothorax, which would involve significant diet change (a test for that is running now -- please pray it comes back negative!). We hope the cath procedure will shed light on these issues with increased chest output. On top of all that, there is also concern for his kidneys as they too can suffer from systemic pressure issues and fluid imbalance. His urine output has greatly decreased over the last week. Our team is trying to walk a fine line in caring for the heart and the kidneys at the same time. The cath procedure may also involve a biopsy of the heart -- a common procedure that tells us how his body is responding to the graft. We're not certain at this point whether they will do this test or not. Please pray that tomorrow's cath procedure goes well, that it is free of complications, and that it will give our team answers that help guide their treatment. Gus is doing really well in some areas, but the increased output of fluid through his chest tubes is concerning, and we need to determine the condition of his SVC. We hope this cath procedure provides some helpful direction for these and other issues. We are enjoying more time with Gus since he's been less sedated. God is so kind. He has granted so many of our requests. We continue to storm the throne of grace for his help. He is our refuge and strength. His will be done. As always, thank you for praying along with us.

Hello everyone. Today has been a long, hard day and it is far from over. We need prayer. Initially, closing up Gus' chest went well. His ECMO cannulas were safely relocated to his neck. He also received a successful bronchoscopy which helped open up his right lung soon after. However, before we even got to see him again, fluid balance issues - which have dogged us repeatedly over the last week - resulted in a build up of pressure that resulted in our team having to open his chest back up. We are all reeling from the whiplash of this turn of events. Now they are chasing him with fluids and he is swollen. He is also bleeding a lot. If we aren't able to restore some kind of balance, we may need to try a round of TPE (dialysis) again to remove inflammation from his body, which this all seems to be a result of. Gus is sensitive and his body is definitely reacting poorly to all he's gone through today. Please pray for Gus, that the Lord would preserve him tonight and see us all through what is shaping up to be yet another very difficult night. Lord have mercy.

Monday's update on Gus: Our little guy has been fairly stable. He's off his vasopressors and his sedation has been reduced. With that, unfortunately, he has more discomfort. Still, it's good for him to be more alert. Sadly, his chest output came back up after tapering off Sunday, so we're still praying for that to resolve. Overall, he's doing remarkably well given what he's been through. We still have a long road ahead, but he's making strides. Thank you for praying with us -- don't let up! We still need to get extubated, avoid infections, get to a place where he can take normal feeds and grow, and of course -- get the chest fluid to dry up so we can remove the chest tubes. Step by step! God grace continues to sustain us.

Hello, friends. Gus is back in his room. He is stable. He's already taken his pacifier (always a good sign). He's heavily sedated for comfort and to keep him from moving around too much (as that exacerbates bleeding). His vitals are stable. He's on a variety of meds to support his heart function, but not at any surprising levels. He's bleeding out his chest tubes significantly, but not at an alarming rate given the surgery he just had. They have given him some blood products (e.g. such as blood from cell saver which essentially returns his own blood to him) to maintain his hemoglobin. His lactic has been a little high, but that isn't surprising either given all that his body has been through. Overall, he came out looking better than we might have expected. This evening and overnight will be the real test in terms of his stability and heart function post-operatively. It will take a while for us to know how successful the valve repair was. All three of us are exhausted. We were well supported by friends and family today. Please pray for Gus to remain stable overnight. Please pray that this surgery will prove effective in the days and weeks to come in service of his kidneys. Please pray for mom and I, as this is often the most difficult part. We certainly feel the weight of past experience, having been through this before. We're so thankful for how well he did today, but it is still heavy. Thank you to all who have been following and praying with us today. We're not out of the woods yet. Long night ahead of us. - but we're off to a good start. God has been kind. To God be the glory.

Take me back. Miss you, buddy.

Hello friends. Two significant prayer requests tonight. I begin by saying that, by outward appearances, Gus is doing well. He's been weaned significantly from sedation, and while that's been hard, he's pushing through. The real concern right now is his kidneys. That's the first prayer request. We got bad news today: a renal ultrasound suggests that his kidneys are not doing well. Perhaps worse than we thought. Despite some improving numbers, they didn't look good in the ultrasound. The prognosis here could be poor. We've likely gone from the realm of AKI to CKD. We could be looking at potential renal failure. This is something with a poor prognosis for someone in Gus' situation. Only time and testing will tell. The picture, I'm sure, will unfold a lot over the next week. In all, this was a heavy blow to receive today and very disheartening. We hope to learn more tomorrow. Praying for our nephrology team to have wisdom. The second prayer request is for tomorrow: Gus has a routine scheduled visit to the cath lab in the morning. This is to try, yet again, for a biopsy of the heart (to check for signs of rejection). They'll also check for other benchmarks and take some measurements. We're praying it is successful and smooth and that Gus is able to go down and come back without complications - we especially hope he will not come back dependent on intubation again. Thank you for continuing in prayer with us. The kidneys *feel* like a less acute issue than the heart did weeks ago, but they have gone through a lot and we're feeling the growing concern of renal deterioration. We are hoping and praying for the kidneys to surprise us. God has seen us through so much. He has been so kind and so good to us. This providence is hard and mysterious, but we have no doubt he will be gracious, loving, and use it for his glory. Thanks, friends.

For anyone awake, we'd appreciate prayer as Gus has been experiencing a prolonged episode of hypotension, and we're all concerned about it becoming another cascading scenario. Please pray our team can find a solution, and get his blood pressure under control. Thanks, friends.

How's Gus doing today? He's doing cute, that's how! In all seriousness, he's doing quite well despite the recent diagnosis of ESRD (end stage renal disease). We continue to pray for a kidney miracle, but in the meantime, the fact that he's smiling, kicking with excitement, and doing well with OT, PT, and ST (and taking the bottle with enthusiasm), is keeping our spirits up. A nurse recently commented on how remarkable his progress has been, even with the setbacks. For that, we praise God for his kindness and for the amazing medical team he brought into our lives.

Greetings on this blessed Lord's Day, friends! Here is an update on Gus covering what happened overnight and where things stand today; as well as how -- for those who do -- you can pray for us. Following his MO, Gus doesn't do things the easy way. It would seem nothing is straightforward for him. After coming off of ECMO yesterday -- a huge step we are incredibly thankful for -- Gus has experienced several episodes of hypotension, some more severe than others. In each case, by falling back on higher doses of various vasopressors, we've been able to regain stability (something we weren't able to do the last time he came off of ECMO). He woke us up around midnight with a serious episode of hypotension, and our team worked until about 3 am to get him under control again. He's done better (been more controlled) when he's hypertensive. It's not ideal in a long term scenario, but we'll take a generally managed state of hypertension over cascading hypotension any time! These episodes are not entirely surprising -- "post-pump slump" is a fairly common experience in which patients coming off of ECMO experience downward trends before they regain equilibrium without support; a kind of allostatic process, if you will. Since this morning, it's been a balancing act for our team as they try to give him the right amount of support so he is stable while also trying to wean his meds whenever possible. The first time we came off ECMO he couldn't push through the slump. This time around he is doing better. Praise the Lord! Based on what we currently know, the culprit of all this is some form of vasoplegic syndrome, a condition in which the body's vascular system is unable to maintain proper resistance and thereby sustain appropriate blood pressures. Vasoplegia is a complex condition that can appear alongside cardiothoracic surgeries. The cause and remedy is not always clear and it can be difficult to address. Imagine having a good pump and leaky pipes. Even with a good pump, you can't sustain good pressures if your pipes are unsound. His heart function is generally acceptable (he has a pretty good pump despite all its been through), but his vascular system is leaky. Hopefully this is more of a "slump" we can push through and less of an issue that will persistently dog us. With some concern, I want to note that his right ventricle did appear weaker on a recent echo than it did before coming off of ECMO -- but that is something that could simply require time to recover. Granted, he's been through a lot in the last day. Unfortunately, we've also seen some other concerning trends with his kidneys and lungs. We pray these remain manageable and do not become anything more acute. At this point, the plan is to keep him sedated and continue to wean him down slowly from the medications currently supporting his blood pressure. Gus has proven to be very sensitive, so we're trying as best we can not to "rock the boat" of progress. Right now he is sleeping and hypertensive, and we are in another phase of lowering meds (which is good!). We've made great progress this afternoon and his numbers are looking promising. Pray that we are able to maintain this progress and arrive at a place of greater stability without more of these breakneck swings. We appreciate your prayers as we confront these various challenges. We are thankful for the diligent efforts of our medical team to pursue a plan of treatment that works for Gus. Please pray for them as they labor around the clock to get him to a place of stability. Pray also for us as we endure this difficult providence. The "roller coaster" analogy feels old and tired, but it fits -- this is a journey of jarring ups and downs. Gus is doing well right now and for that, we are immensely thankful. God has been kind to us in the midst of this ongoing difficulty. "Blessed be his name." Thank you for praying with us. Please continue to do so!

Today marks 100 days in the hospital with this guy. It's been unspeakably hard, but we've seen and experienced so many amazing things. 100 days of God's Fatherly kindness. 100 days of his provision. 100 days with Gus we might not have otherwise had. Still a long way to go. SDG.

Tomorrow may be a big day for all of us: Gus may be extubated tomorrow if everything is ideal. Praying he has a good night tonight & that he'll be successfully extubated (and not need to go right back on) tomorrow. Balancing fluids for both lungs and kidneys will be a challenge.

Hey everyone -- I'm certain a lot of people are missing the daily updates. It's been helpful to rest from that for a few days though because (and I didn't realize it at first) a lot goes into it! Taken together, a good bit has happened over the last few days, so here is the latest update and a look at what's ahead. On the positive side, Gus is still trending in a good direction. As of right now, 1) his feeds are at goal volume, he's tolerating them well, and they just increased his caloric concentration 2) his ventilator support has been dialed down and he is no longer on the additional nitric support 3) he is not on any vasopressors 4) although it remains a persistent issue, his chest tube output has been trending downward, albeit slowly 5) his kidney numbers have been improving. So -- lots to be thankful for! As for those things which are of concern, we've had a few bumps in the road and some discouraging developments -- though nothing that's halted Gus' progress. First, we've had a lot of what I'll call (for a lack of a better term) "mechanical issues" or hiccups with his medical apparatus. Gus, like a lot of heart babies, has always been a hard "stick" and managing his lines and dressings is an ongoing hassle. There have been issues with his respirator tube, gagging, and some emesis. On the positive side, he has not been destabilized by any of these issues and that is an encouraging sign of the progress he's made. Second, we had an incident the other night, where, just as a doctor came in to check on him, Gus had a curious but brief neurological episode. It clued our team into the need for some kind of neurological evaluation, so he was sent in for a CT scan. What it showed was that he had experienced an intracranial hemorrhage (ICH) that left a site around 2 cm in diameter near the sulcus that separates the frontal and parietal lobe in the right hemisphere of his brain. A follow up CT done earlier today shows no change, so it's not an active bleed. It's not easy to determine when this occurred. It could easily have happened in one of the more intense moments he's had over the last few weeks. While it is discouraging to learn this, new EEG monitoring (thus the return of the leads on his head) have shown no sign of seizure activity, and according to our neurology team, the episode he had was not consistent with typical seizure activity. Only time -- and an MRI -- will give us an idea of what the implications of this hemorrhage will be. Some motor development issues on the left side would be unsurprising. For now, no neurosurgery or intervention is expected. Please pray it doesn't evolve or worsen. The final development I'll add is related to the recent cath procedure he had in which he received a balloon angioplasty to relieve some stenosis in hia SCV. While it was initially successful, symptoms (such as some disproportionate upper body swelling) suggests that the SVC may be growing stenotic again. This means he will need to have another cath procedure, currently scheduled for Monday, to balloon the SVC again. Pray this goes well. Assuming everything goes well in the cath lab on Monday, the next big development will be extubation sometime next week. So -- there's your update. Lots to give thanks for. Lots to pray for. God is good.

The team worked furiously overnight to slow bleeding. Amazing people in the CICU. He is more stable than he was 12 hours ago. Physically, he looks terrible - not surprising given what he's gone through. He's on a lot of BP support. His sugar is very high, probably from stress and steroids. He was hyperkalemic last night, but that is now normalized. He had severe acidosis, but that has normalized. He's on continuous brain monitoring. His lactic is still high but slowly trending down - bad kidneys are probably making it harder to clear. There's no way just yet to take a full account of the damage to his body, especially the brain. We pray & wait & assess the damage. Thank you for your prayers. We're just devastated to be here. He looked so good 24 hours ago. There are no words to capture the emotions of the last 12 hours.

Hello friends. Happy Lord's Day! Here's an update on how Gus is doing today: Over the last 12 hours, we've struggled managing his blood pressure while on ECMO. It could be any number of things: fluid balance, his heart actually improving against ECMO, not getting good sleep (delirium), etc. please pray we can manage this as it seems to bring discomfort for him. Other things to pray for: we've seen some ischemic damage in the tissue of his right arm/hand. It's being managed but we hope this does not worsen. We've seen some pink phlegm and urine. Not unusual for someone on blood thinners and ECMO, nor alarming at this point, but something that could involve complications. Finally, and most important: tomorrow could be a big day for Gus. We have another echo to check heart function, and we could be looking at testing the waters in hopes of bringing him off ECMO, a process that can be risky. Please continue to pray that his heart function will improve in order to support his body adequately. God has been so kind in giving us this time with Gus. We continue to appeal to him and trust him with our son. We remain thankful for our team of incredible nurses and doctors. Christ is our refuge. His grace is sufficient. Thanks friends for taking up our cause in this unified ministry of intercession. Also, because people asked about this and have a desire to help (but with no desire to pressure anyone in any way), here is the GoFundMe family members set up for us as we began this journey: shorturl.at/pCGM0

Today marks 75 days since Gus was born -- 75 days of our little family living at the hospital. Tonight's update on Gus includes some more highs and lows, along with some specific prayer requests for overnight and the days ahead. I'll start with a high and an answer to some very specific prayers. Yesterday we were running into a lot of access issues as we lost an RA line, making it much more challenging to administer meds. Multiple attempts to get new access had failed over the day. One of our cath doctors came in to try one more time. We prayed very specifically about this attempt, and our prayers were answered. We had prayed for it to go so well we'd all be surprised -- and we were, including the doctor. Praise the Lord for this kindness! As for some of today's lows: Gus started struggling with his blood pressure again this morning -- low diastolic pressure. Again, signs point to fluid imbalance. Episodes like this may have also led to poor profusion to the gut, and he's been puking today, even with nothing but gastric fluids in his belly. The struggle to reduce chest output and improve kidney output has continued. His heart function still looks good, but we really need this chest fluid to reduce and for his body to do a better job of.processing fluid through his kidneys. Please pray with us for continued stability, especially overnight as we try to rest. Pray for our amazing medical team as they work to balance Gus' fluids and address his heart and kidneys. Pray for a solution or resolution to his chest fluid output. Pray that God would be known and glorified in our circumstances. Despite these current challenges, Gus has come so far -- we never want to diminish what God has already done. The Father has been so kind to us. The Spirit has given us peace and joy in the midst of this. Christ is our precious and sympathetic intercessor. God's grace has been and remains sufficient. Thank you for praying with us.

What a gift it was to be with, serve, comfort, hold, and (in general) love this sweet boy. Thank you, Lord, for every moment with my dear Augustus.

So -- Gus' procedure today went well. In fact, based on preliminary reports, it went really, really well. The IR (interventional radiology) team was able to access his thoracic duct, get better imaging this time, and succeeded at embolizing a significant portion of the duct. This was what we were praying for. The doctor himself noted that "today was just different -- maybe it was all the prayers." Now we wait and see. It can take time to see how effective the procedure will be at reducing the chylous output. We hope the amazing success of the IR team today can help us avoid more invasive surgical procedures. We also hope this sets us up to return to our 'home away from home' at Norton Children's to work on the kidneys, lungs, and nutrition -- but -- one day at a time. Pray for Gus as he heads into the night and all the sedation he was on tapers off. We hope he's not too uncomfortable and is able to get some rest. Praise God for the answer to prayer and join us in thanking him for the amazing doctor and team that got it done today. If it's the Lord's will, we pray this marks a huge turning point for Gus by removing a major impediment to recovery and progress. Thanks, friends.

Hello, friends. Gus is doing alright. He's had a few rough days/nights, likely due to the withdrawals as he is weaned from sedation. He went back on oxygen support the other day, but only minimally. Kidneys have shown encouraging signs, but urine output is still poor. Tomorrow he has another visit to the cath lab (we are oh so tired of cath lab days, but they come with the territory). The goal will be similar to the last lab visit: angioplasty of his femoral arteries so they provide easier access for future cath procedures. They may try once more for the heart biopsy. They'll get some.other measurements as well. He's the second case tomorrow, so there's no telling when we'll go down or get back. Please pray that, like last time, all goes smoothly. Please also continue to pray for his kidneys and for his comfort as he adjusts to fewer meds. Thank you all.

Hello, friends. What follows is the latest update on Gus' condition and progress. Long overdue - I know. Thank you for your continued patience! In short, Gus is doing well in day-to-day terms. In the long term, the situation with his kidneys is not much better. He has now reached the point where a formal diagnosis of end-stage renal disease (ESRD) is appropriate. What this means is that we are adding long-term dialysis support and the likelihood of a kidney transplant to our heart journey. Gus continues to recover from his tricuspid valve repair surgery. His chest has healed significantly from the sternotomy to the point where the sutures have been removed. He only needs oxygen support at night. He is fed mostly via NG, but speech therapy continues to work with him on bottle feeding. His meds are now given almost entirely through the NG - meaning fewer lines. We've enjoyed many smiles lately. With his left-sided palsy, this takes the form of very endearing (and cute) half-smiles. His legs have been kicking with energy and excitement. He is doing remarkably well for all he's been through and everything he is dealing with. The dialysis situation has also progressed nicely. He is at his goal amount of dialysate and we are working to get his total dwell time down to the point where he can be transitioned to a cycler. Once he is successfully on a cycler, we will be moved from the CICU to the PCU. This is the natural progression towards going home - something we are both excited about and incredibly apprehensive about. That will be a delightful yet difficult transition. As I said above, today marks a somewhat arbitrary date for Gus' kidneys. The time has come when it is appropriate to diagnose him with chronic kidney disease and (potentially) end-stage renal disease. In practice, it doesn't change much, but symbolically, it hits hard, especially six months in. We never really anticipated our heart journey becoming a kidney journey too, and the prospect of it all is, frankly, daunting (to say the least). The days and weeks ahead will continue to bring direction into greater focus. We would ask that prayers be made for us in our weakness and for Gus in his continued recovery. He is well into teething, which adds additional discomfort. There is also some concern about swelling and 'puffiness' in the face - is it his SVC? Is it simply the effect of the steroids? A future cath procedure will likely give us answers. Either way, it appears to cause discomfort, so we appreciate prayers for us and his team as we continue to care for him. Speaking of prayer... Tonight, members of our local church are gathering after our evening service to pray - to pray, should God will it, for a miracle: for a recovery that, at this point, appears beyond the reach of medical means. They will likely pray for our Father to continue, by the intercession of his Son and through the power of the Spirit, to graciously sustain us and give us wisdom - as he has been - through the difficult days ahead. We will ultimately pray for his will to be done and his name to be glorified. This is no cop-out, but appropriate deference to One who knows the beginning from the end, One whose ways are not our ways, whose providence is often mysterious, and whose love and goodness surprise us in ways beyond our ability to imagine - the greatest expression of all, of course, being Christ's cross-work, considered foolish by many. Wherever you are, if you wish to join us this evening in - as some have often put it - "storming the throne" for these things, we would be incredibly grateful. In a word - pray and share! God has already done many great things for us and our son. He has answered many prayers. He has done things that defy expectations. We will keep praying. We will continue to give thanks. Each day is a gift. Gus made me a father, and that is a gift beyond reckoning. Hopefully our next update will come sooner. 😉

We really thought this room in the PCU was going to be our last home away from home before really going home. Gus wasn't having it. He wanted to see his friends in the CICU, so he took us back there one last time. Of all the things it is most difficult to lose, touch and smell are the hardest. I can 'see' him again in pictures and I can 'hear' him again in videos. But I cannot touch him again in any sense. I cannot smell him. We saved some of his dirty laundry - wild considering how we used to rush to the hospital laundry room or rush back and forth from home to do laundry. There are some things I may never clean again - though they will lose his scent all too quickly, and it will be gone for good. Miss ya buddy.

Hello friends and family! Today is day 92 of being in the hospital with Gus. Gus is now three months old! I know it's several days since we've provided any updates on Gus. This is largely because not much has changed: the same issues holding up substantial progress continue to dog us. If anything, it feels like Gus has had more setbacks and we are definitely feeling worn down. Last time I used the word "slog" to describe this phase of our story -- a common experience for many heart families -- that word remains an apt description of the last week. Thank you to those of you still patiently following our story as it develops. Here are where things stand and how you can be praying for us. First and foremost, Gus' continues to struggle with chest drainage. This is something we've been dealing with since his transplant. If you recall, he was officially diagnosed with Chylothorax several weeks ago, so we know this fluid is tied in some way or another to his lymphatic system. While we have seen some reduction in chest fluid output, he is still putting out enough to warrant significant intervention. Because fluid balance is so important to heart function, it can contribute to bouts of instability. Further, chyle tends to contain vital proteins, vitamins, immunoglobulins, fat, and electrolytes, meaning that this output is costly, and over time can result in other complications. The chest drainage is probably the most pressing issue we are facing right now. We need prayer for this to resolve itself, otherwise more dramatic intervention may be necessary. Because feeding can worsen chyle output, he remains NPO (no feeds) and hasn't eaten in over a week (though he's still on TPN and lipids for base nutrients). We can't really make significant progress until his chest fluid output dries up. Pray for our medical team, that they would have the wisdom needed to address this. Certain elements of this pathology may exceed the scope of the resources available at our hospital. Please pray for our team as they plan accordingly. Obviously, our hope is that he will 'dry up' on his own over the next few days. Second, Gus' blood pressure has not really recovered since his cath procedure last week. Prior to that, his pressures were fairly stable and he had been weaned off all vasopressors (e.g. epinephrine). Since last week he has needed more blood pressure support. Unfortunately, it also means he's had a higher heart rate. Today he's struggled with hypotension and our team has given him fluids and increased his drips to keep him in a stable position. Gus is also much more tired, probably as a result of the higher heart rate and lower pressures. When he's asleep, his pressures trend lower, resulting in a vicious cycle. The chyle and chest fluid output, which throws off his fluid balance, is probably the primary culprit seeing that his heart function is unchanged. An echo today showed no deterioration in heart function -- we are thankful for that! Third, Gus' right lung has remained stable despite the setbacks we saw last week. He's receiving breathing treatments. He's also having CPAP trials that evaluate his ability to breathe on his own ahead of potential extubating. We would love to see him get extubated. However, we know he is in a weaker condition now than he was a week or so ago. It wouldn't be surprising to see him get extubated and then need to be reintubated. We long to hear his cry again -- he's been intubated since January 16th. Fourth, Gus' kidneys have also been trending in a negative direction. Today he's had very little urine output and that is concerning to our team. This too is probably a consequence of our ongoing struggle to balance his fluids while his chest continues to shed a significant amount of chyle. Fifth, neurologically, Gus has had some strange episodes with what look like seizures. However, EEG monitoring has not shown seizure activity, so it's entirely possible that something else is going on (e.g. electrolyte imbalance, reaction to sedation, etc.). It's also not surprising given the ischemic damage and the brain hemorrhage we know he's suffered. Generally, he's still the same old Gus, and his motor function is good overall, but his eyes have had some abnormal episodes. Our neurologists have told us it would not be surprising if he needs to consult an ophthalmologist down the road. In sum, while we're not in the same dire straights as we were several weeks ago while he was on ECMO support, these challenges are significant and serve as a fresh reminder (despite how familiar all this feels) as to why we are still in an ICU and not a typical inpatient unit. Gus is still very sick and we are not 'out of the woods' yet. Many of you have been asking how you can be praying for us. Please continue to pray with us as we face these ups and downs -- what feels like mostly downs as of late. Pray that, if the Lord wills, his chest output would dry up on its own without some other major intervention. Pray that some solution to the chylothorax would make itself known. We are certainly wearied by the recent setbacks and the lack of progress. Our medical team is still providing excellent support, even in the face of Gus' unique circumstances. Gus' case is a challenging, and at times, bewildering one. Our team is exhausting all options to see him through this. We are, through our weakness, seeking to trust in the Lord's sovereign care. We are submitting to his providence. His grace is still sufficient. Thank you to all of you who are enduring with us in prayer. Thank you for all who have offered their kind thoughts and encouragement. Truly, the support is all very fortifying for us.

Hard to keep socks on these feet! 😉 Gus had a good day. He struggled with some soft pressures this morning, but improved through the day. He had a lot of alert, awake time today. Had a renal ultrasound. His kidneys are still unhappy, but we've seen some subtle improvement. Started back on a milrinone drip to help his new, stiff heart to fill better. As always -- thank you all for praying with us and following us on this wild journey. God has done amazing things (praise him)! You may notice me post less often about Gus (as in, not daily) or post less elaborate updates if we get some more of these calm, routine days. It doesn't mean we won't be praying. We're not out of the woods yet, and we're still in an ICU unit. There's simply less to report, and we're trying to get some rest. I'll keep updating whenever we approach milestones or procedures, and I'll be sure to make pressing or urgent prayer requests known. For now, keep praying for us to see the chest fluid dry up, his kidneys improve, for feeding to progress, and for us to successfully wean him off the respirator support. Hopefully mom and I can continue to get some rest after what has been a marathon of a month! These less intense days come with their own unique challenges especially as we feel the pull between our son in the hospital and the demands of everyday life piling up on the sidelines. Even if things go well, we could be looking at another month or two in the hospital... Oh how we long to bring our boy home! We so look forward to that day. Let it be, Lord, we pray -- but not our will, but your will be done. "O Lord, You are my God. I will exalt You, I will praise Your name, For You have done wonderful things; Your counsels of old are faithfulness and truth." Is. 25:1 --- Lastly, because we've had people ask about this and since it has been a long time since we've mentioned it, our family did set up a GoFundMe a while ago when we realized how long this chapter of our lives would be. We've been well provided for and have a great support system, so please don't feel any pressure from us. We can't express enough gratitude for all the kindness people have shown us in this incredibly difficult season. Simply, for those that are blessed to give, here is a link to our campaign: shorturl.at/zGMW9 Thanks, everyone! Good night from our family to yours.

Over the last week, Gus has done well in terms of post-operative recovery. He had several days of discomfort and delirium, but he seems to be moving past that. He's taking a bottle again. He's alert when awake. Unfortunately, we've had two discouraging developments re: his heart & kidneys. Despite what were originally promising results, it appears the tricuspid regurgitation (TR) we sought to address in surgery last week has gone from mild back to severe - as it was prior to surgery. The cause of this is unknown. Gus will have another TEE (transesophageal echocardiogram) tomorrow to get a better look at the heart's function and anatomy. Hopefully we will learn why this regress has occurred. It could be any number of issues. Perhaps the valve has gotten worse. It could be a fluid balance issue. Maybe something done during the surgery has since failed - we simply don't know. What we do know is that valve repair surgeries are very complex and don't always produce the desired results...and Gus rarely does things the easy way. As for the other development: the most recent renal scan has shown further deterioration of kidney function. While the kidneys are still perfusing, they are not perfusing as effectively as they were a month ago, with little to no output. This suggests the prognosis for his kidneys is poor. Even if they recover, the likelihood of CKD and eventual renal failure is increasingly likely. It's hard to hear news like this 177 days into our journey with Gus. We're tired and worn out. We're thankful for our friends and family who continue to support us, as well as for all those who are following our story and offering their prayers and encouragement. We continue to confess that God is good. Even in the midst of difficulty, there is beauty. There are precious, happy moments that, apart from the amazing care Gus has received, we wouldn't have had with him. We pray, and we hope, and we love. God's grace will prove sufficient. We'll have more updates once we know more.

Prayers appreciated as Gus just went in for a routine cath procedure. He looked good going in today. Hoping for a good report. They expect to check the heart function, remove a central line, and perform angioplasty to rehab veins for future access. Thanks, friends.

Hello friends. Gus had another unremarkable day -- which is a good thing around here. We're still seeing a lot of chest fluid and diminished kidney output. His right lung was set back a little following the Cath procedure. Tomorrow they suture his chest skin closed! How to pray: Pray for our team as they work to balance his fluids. It's probably the most pressing issue right now. His kidney numbers have been concerning, and most of his fluid output is still coming from the thoracic cavity. We need the body's vascular system to process more of that through the kidneys. Pray for the surgical team as they close up his chest skin tomorrow. They closed the sternum last week and it went well. Now we need to remove the wound vac and suture the skin shut. Another big step forward. Pray that, like his recent procedures, they'd go without complications (like inflammation). Keep praying for his right lung. The left lung is actually a little hyperextended. The right lung is still a little collapsed. Set back, perhaps, from his time in the cath lab. Once we suture his chest, the next big goal will be extubation! We look forward to the Lord bringing us there. So there you have it: chest closure part two tomorrow morning; kidneys and fluid balance; lung operating properly. That's what we're praying for today. Thanks to all who are praying with us. May the Lord's will be done and may we receive it with joy.

Blessed Lord's Day! Always a joy to hang out with this little guy. He's had a good afternoon. No troubling symptoms from the cold yet.

Barring a miracle, friends, we may lose him. Plead with us for a miracle - let God's will be done.

Hello, friends. Gus did well today in the cath lab. It was the shortest visit to the lab we've had and he was extubated immediately afterwards. The rehab of his femoral vein went well. It was an encouragement to see him do so well with the procedure -- given how destabilizing these trips could be in the past. At one point today, while things were being changed around, Gus had no IV drips. If we're remembering correctly, it's the first time since he was born and taken to the NICU that he wasn't on a drip of some sort. He only has one PICC line now. He still has a lot of meds, but they are given enterally now (through his NG). This feels like a visible sign of progress. Less medical paraphernalia towers around his bed today than it did weeks ago. To update those who are following the situation with his kidneys - they are still in a suboptimal condition. His renal function panels have been returning some concerning numbers as our team tries to find a fluid balance for Gus that works well for his kidneys. Those familiar with this know how difficult it can be to provide the right care to different organs (e.g. lungs, heart, and kidneys) at the same time. He's doing well, but, as I've said before, we're not out of the woods yet. There are some concerns on the horizon that we will address in the days ahead, and his kidneys are still struggling, but he's come so far in four months. Someone asked me today, and I had to check, but today marks 143 days of Gus being in the hospital. God has been so kind meeting us with sufficient grace at every turn. The three of us could not have come so far without care of our local church, family, and friends; the prayers of so many people around the world; and the talented, compassionate, and persistent medical team at Norton Children's - they care so well for Gus (and us) every day and every night.

Gus is off for his rescheduled cath procedure. Hoping to balloon the SVC, get a biopsy to check for rejection, and measure pressure gradients. Please pray for the anesthesia and cath lab team as they work on Gus over the next few hours. Thanks, all.

Sunday afternoon update on Gus: The bronchoscopy went well. Several large mucus plugs were removed which should theoretically help open up Gus' right lung and make it easier to treat with saline and the ventilator. Probably won't know outcomes until tomorrow's X-ray. Praising and thanking the Lord for this and the skillful team that worked on him today. We're also happy to say that we're trying to reintroduce feeding this afternoon -- albeit in very small amounts. His blood pressure, fluid retention, sensitivity to bleeding, treatment of bacterial infection, avoiding complications on ECMO, and greater recovery of that right lung remain our specific prayer requests at this time. It's also possible our team may consider closing his chest tomorrow to reduce the risk of exposure and infection. It will involve changing the sites for ECMO access to his neck. That could be a sensitive surgery, especially if we're struggling to maintain a good fluid balance, so please pray for our team to have wisdom as they navigate the timing for that. God has done so much and we are so thankful. Yet, there is much we are still praying for, and many anxieties we are continually casting before the One who cares for us. Thank you for remaining with us, interceding along with us for our beloved son. -- Someone mentioned the other day as they walked into our room how this scene, pictured below, shows just how much is being mobilized to help Gus get through this. It's sobering. We're thankful to live where we do and have the kind of access to treatment that we have.

Hello, everyone. Happy Easter! Gus is doing well. We've had several good days and nights. Kidneys are still a major concern. He's struggled with some delirium and discomfort, and he's been really tired (probably from the CPAP trials - he's doing more respiratory work). Tomorrow, or sometime over the next few days, he might be extubated if other factors permit it. Please keep praying with us for his kidneys. His urine output has been very minimal. His kidneys have been through a lot and we hope they are able to recover. Thankfully, we've seen his renal panel numbers improve over the last day or so. In the midst of this ongoing difficulty, we are thankful for the encouragement our pastor offered us this morning: because of what Christ accomplished, those who hope in him can confess with Paul: "Who is he who condemns? It is Christ who died, and furthermore is also risen, who is even at the right hand of God, who also makes intercession for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? Yet in all these things we are more than conquerors through Him who loved us. For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord." Romans 8.34-35, 37-39.

Happy six months Gus! Hard to believe we're halfway through his first year. We've been through so much together. God has been kind. Gus is doing okay and remains stable. His kidneys still aren't doing great, but we're working to increase dialysis passes. He's a little more uncomfortable because of that, but he's making progress. The goal is to get his fluid balance more consistent and stable and transition to a cycler. Keep praying with us, friends. Thank you so much!

Hello friends. Today, in a way, Gus looks better than he is. I never thought I'd find myself praying earnestly for my son to pee, but here we are. While our team has stabilized Gus significantly over the last 24 hours, his kidneys have been deteriorating - it's not good. At this point, Gus is essentially suffering from acute kidney injury (AKI). His urine output has dropped off and his RFT (renal function tests) are showing elevated creatinine levels and blood urea nitrogen (BUN) levels. So while he looks good, his kidneys are quietly suffering. The issue here is that AKI can develop into chronic kidney disease (CKD) which, in a child as young and as small as Gus, would likely become a terminal issue. This issue has essentially taken primacy over other issues for Gus like his ongoing Chylothorax -- despite the severity of it (he dumped over 700 ml out of his chest in one 24 hr period). Our team is still working on treatment options for that in the background, but right now the main concern is with renal function. Please join in praying with us earnestly over the next 24 hours as we plead with the Lord for his renal function to improve. Essentially, we're "praying for pee." In ourselves, we don't deserve God's help, and we don't enter his throne room demanding it. I was reflecting earlier today that the only reason I can go before a holy and omnipotent God to make bold requests for my son is because of Christ. My Mediator, Savior, and Intercessor. May God's will be done in us. God is good. Thank you all. We'll keep you posted. For now, here's a look at the "big kid bed" Gus was upgraded to today. The giraffe bed was getting too crowded.

Hey friends. Today marks 150 days in the hospital with Gus. I'm sorry I haven't had more updates. Longer update coming tomorrow. Gus is still stable, and he's made progress over the last week, but we have some big challenges facing us and we will need lots of prayer. I'll add some details tomorrow.

Gus did well today. He was in the cath lab for 5-6 hours total. His team was patient and persistent. Despite not getting the access they wanted, they got a lot done. They couldn't get the biopsy due to maneuvering risks (risks we are glad they did not take), but set themselves up to (hopefully) get it next time. Gus came back to the room and was quickly extubated again because he was doing so well. For all this we are thankful. His nurses did so much (and are doing so much even tonight) to see him through a long day. So appreciative! The nephrology team consulted with us today and as we understand it, they still believe Gus is within a narrow window where some degree of recovery is possible. They want to continue to give the kidneys the ideal environment in which to recover and monitor their progress. Tomorrow we will hold the peritoneal dialysis and add diuretics to see if his kidneys respond with greater urine output. Later next week we will do more advanced imaging. In all, there are a lot of ways this could go. For now, we wait and pray while his team monitors and troubleshoots. Our church family took time to pray for us this evening, and we were greatly encouraged. Thanks to all who continue to pray for us.

Sleeping peacefully now. Had a good night. Cath procedure expected around noon. Looking to get some pressure data, take a biopsy (to check for any signs of rejection), and potentially balloon along the IJ/SVC. Prayers appreciated. Will update tonight.

Only a month away from what would have been his second birthday, I find myself achingly missing my son. Even saying "my son," feels strange. Loss is like a tributary that, once it flows into your life, is forever part of life's stream, even when it is diluted by new experiences.

Two months. It's kind of an arbitrary milestone, but it hits differently framed that way. Hardly a day goes by without me thinking, "Man, what I wouldn't give to see you smile one more time or stand by and watch you in sweet repose." Love you, Augustus. Love you, buddy.

Hello, friends. Gus is doing well. We're still giving time to see how effective Friday's treatment will be, but we're hopeful. The big news tonight: we're headed back to @NortonChildrens tomorrow! Their team is planning to come get us & bring us back to our 'home away from home.' Once we get back, we'll be working on Gus' lungs (hoping for extubation), kidney function, and nutrition. Please pray for safety as we travel back to Louisville tomorrow. Please pray for the chest output to truly come down so that we will not need more surgical intervention. Much thanks to the team here at @VUMCchildren. We're excited to be headed home, but we know we're still weeks away from taking Gus home. We're not out of the woods yet. God has been kind. We hope our time here at Vanderbilt has truly helped Gus take a big step forward. We continue to pray for the chest output to dry up -- may God's will be done. SDG.

Hello, friends. Gus is doing okay at the moment, but we had a difficult night. Yesterday afternoon into the evening, he became increasingly hypotensive. Between 12 am and 3 am his pressures became increasingly unstable. Here's an overview of what happened and where things sit now. Last night, while my wife and I were taking turns holding him (2nd time!), Gus' pressures tanked. His blood pressure recovered when we put him back in bed, but over the next hour, they began to cascade, with no fixed response (initially) to epinephrine or fluids. From 12 am to 3 am it got worse. Only around 4 or 5 am did things start to turn a corner after our team restarted vasopressin. Needless to say, we didn't sleep last night. This response, though it felt a lot like the severe vasoplegic episodes he had after coming off ECMO, was likely the result of a dramatic fluid shift that his body simply didn't tolerate -- especially with his heart still being a bit stiff and underfilled (functioning much like a heart with HCM). He shed a lot of fluid via his chest tubes (still in place for drainage following his chest closure) and urine output in the hour leading up to this episode of severe hypotension. It likely pushed him beyond his own tipping point. Returning fluids and restarting vasopressors seemed to eventually help him stabilize. In this way it was quite different from the uncontrollable vasoplegia he experienced several weeks ago. Most of the morning was spent changing dressings and running tests -- including an echo and ultrasound to investigate his heart and the cardiovascular system in the neck and chest. As I mentioned above, Gus had a significant increase in chest fluid drainage overnight. This was probably a contributing factor to the fimbalance that sent his pressures spiraling. The primary cause of this is unknown. It could be related to his heart function. It could be a result of stenosis in the nearby vascular system. Our team will look at the echo and ultrasound, strategize, and go from there. At the moment, there is no clear or urgent explanation, so we'll simply continue a slow and patient approach to balancing his fluids. For now, he's doing well and our team is already weaning him off of the meds he needed last night. All this is a reminder of the long and complicated process between transplant, recovery, and going home. We're very thankful for the doctors, practitioners, and nurses walking us through these ups and downs. Once more God has been kind, seeing us through another difficult night. God be praised. Thank you to all of you who are praying with us and for us.

Latest update on Gus: Yesterday was a day full of challenges. That seems to be the rule rather than the exception with our Gus! He failed the ECMO clamp test, so he was not able to come off of the support. Once more, our team has reinforced the fact that his heart function is actually quite good -- especially given that it wasn't beating just over a week ago. The reasons he failed the test were lung function and hypotension. The night ended with him heavily sedated and paralyzed so that they could manage bleeding from the chest cavity caused by the exploration earlier that day. Extended periods of bleeding are always a risk on ECMO. Thankfully by around midnight they were able to slow his bleeding. It feels like we've added another set of challenges to our already lengthy list. Right now the primary concern is no longer the heart, but the right lung. This means we've added pulmonology to our medical team! Following the ECMO trials yesterday, Gus received a bronchoscopy in which they discovered a large mucus plug blocking off the branch to his right lung. They were able to partially break it down, but given his size it is difficult to do these kinds of invasive procedures. As of this morning, his right lung was essentially collapsed and filled with mucus. There were also signs of a bacterial infection found in some of his secretions; the mucus extracted during the bronchoscopy is being evaluated. Today, we hope, will be a calmer day. They will work on helping Gus shed fluid, remain free from excessive bleeding, balance his myriad of meds, and strategize on how to address his lungs. Tomorrow we will probably have another bronchoscopy in hopes of removing more of the mucus. We desperately need to see some kind of recovery in the right lung. Our team is concerned that we are in a race between recovery and risk. His heart is much better, but his lung and hypotensive issues are preventing him from coming off of ECMO. There is also the growing risk of infection from the open chest cavity (for those who don’t know, it is often left open and patched to reduce inflammation and give the new heart room after transplant; it also serves to provide easy access for cannulating while on ECMO). Because of this, we could be looking at closing up his sternum as early as Monday and switching his ECMO connections to the neck. The concern over hypotension also persists. We hope that this is somehow tied to the lungs and infection. Perhaps addressing these things will help him retain fluid and maintain good blood pressure for the next ECMO trial -- something that would probably happen early next week if his lung makes progress. He's also been sedated a lot over the last few days and could continue to be in the coming days. This has a lot of benefits for someone in critical condition like Gus. It also has consequences -- like delirium. This weighs heavily on us, though we know it is needed at this time. Friends, we have come so far, and God has answered so many of our prayers. Admittedly, we do feel a sense of discouragement from all these ups and downs. The waves of difficult news are wearing us down. Still, we prayed for his heart to start beating and it did. We prayed for his heart to recover and it has significantly. Gus has come close to death many times and God has preserved his life. God's grace is sufficient. Now it is time to pray with equal fervency for God to heal his lungs and bring him to a place where he is stable enough to come off ECMO. Please especially pray that the bronchoscopy tomorrow would be successful in removing mucus. In the mean time, we must pray diligently that God would preserve his life and keep him from any additional complications while he's on ECMO. Please continue to pray with us and for us. Thank you for all who continue to pray steadily on our behalf. Your prayers continue to fortify us in our weakness and weariness. "And this is the confidence that we have toward him, that if we ask anything according to his will he hears us. And if we know that he hears us in whatever we ask, we know that we have the requests that we have asked of him." I John 5:14-15 "Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." Heb. 4:16 -- Since some have asked along these lines, here is a link to the GoFundMe setup by our family. Please feel no pressure to give! We simply want to provide a way for people to give who would be blessed to do so. The Lord has been meeting our needs and our friends and family have been very supportive: shorturl.at/juEZ7

God is kind. Gus is doing okay. He's making good progress, despite struggling with discomfort and potential delirium. Pray for his comfort, rest and recovery. Tomorrow we will have another kidney trial - hold dialysis, add diuretics. We are praying and pleading for urine output!

Gus is resting and stable. Overall, the procedure today went well. The interventional radiology (IR) team was able to locate what they think is the source of the lymphatic fluid drainage into his thoracic cavity. This is the working theory: it looks like the occlusion of his right internal jugular (a prior complication of ECMO cannulation) essentially results in systemic backup -- as the thoracic duct drains to this area. Consequently, chylous fluids backup in the thoracic duct and drain into the lungs and chest cavity. Gus was stable throughout. As for a resolution: we didn't get that far today. It looks like this will be difficult to resolve in IR and may require a surgical procedure for ligation or excision of the thoracic duct. We may make a second attempt at embolizing the duct with the IR team, but no plan is yet in place. Our team at Vanderbilt is consulting with our team at Norton to determine what we will do next. For now though, we are thankful that Gus remained stable throughout the procedure and that the procedure itself provided some insight into this fluid drainage issue. Praise the Lord! Our Father was so kind to us today. Now we pray for a stable night and wisdom for our teams as they pursue a solution. We are praying that we might even see some reduction in chest output over the next day or so (the lipiodol contrast used during the procedure can be embolizing). We're all tired and looking to get some rest. More plans to make tomorrow. Thanks to all who prayed for us today!

Enjoying our time with this guy. Big day tomorrow. Gus will head to the OR tomorrow morning around 8 am. It will be a long day. The goal is to repair his tricuspid valve in hope that it helps support his kidneys. I'll share updates throughout the day. Storming the throne. Thankful for the invitation to come boldly for grace in times of need. God is good.