Mack Attack

 8/21/22 Before and After Surgery As we pulled out of the Ronald McDonald House towards UIHC for surgery day, we flipped on the radio and In Jesus' Name  started. Courtney burst into tears right away as this song has been so near to our hearts through this journey. The emotions were rolling early as the surgery approached. We were able to spend extra time with Macklin that morning as the surgery was slightly delayed, and we soaked up every moment. We had to take a step out for a bit as the nurses wrestled with trying to put in arterial and IV lines -- Macklin's blood vessels are never easy to find or access. Eventually, the time came to roll Macklin down to surgery and all we could do is continue to hope and pray. The surgery took about four hours this round. Dr. Ortega met us in Mack's room drenched in sweat right after the surgery. He was pleased to announce that he was able to embolize four big feeder arteries with success. He also noted that they did a follow-up ECHO ri...

 8/16/22 Since the Cath Lab... On August 5th Macklin had a procedure in the pediatric cath lab where they intended to collect the most accurate data on the pressures of his heart through diagnostic testing as well as place a stent in a pulmonary vein. By the grace of God, Mack didn't need a stent, and we learned a lot about the state of his heart. Since that day, the conversations with the teams of doctors have been burdensome and endless. The result of the diagnostic data led the doctors to believe that Macklin needed another embolization surgery again as soon as possible. This was hard news for us to hear. Days before we had been dreaming about going home -- had seen the finish line in our view, and now we had to shift to thinking about Macklin going back into an incredibly risky surgery like he had back in June to save his life. Boston or Bust When we were told that Macklin needed another major surgery again, our efforts pivoted quickly to trying to get Macklin transferred to Bo...

 8/7/22 New Findings Friday felt like a roller coaster ride. We were mentally and emotionally being pulled along as we ramped up for another surgery for Mack. We prayed over him, said see you in a bit, and watched him be wheeled out to the cath lab. Within two hours we got a call that the procedure was over. This was unexpected as we were told it would take 4-5 hours that day. We rushed back to his room from our waiting spot and were able to talk with the pediatric cardiologist who did the procedure. The first goal of the procedure was to do a diagnostic test that is the most accurate way to get all the pressures of Macklin's pulmonary system. Our prayer in that test was that they would not find any need to put a stint in Mack. That prayer was answered. The surgeon told us his pulmonary veins looked great and there was no need for a stint at all. Secondly, he said something that caught both of us by surprise, so much so that Cory asked the surgeon to repeat it two more times. Dr. A...

 8/4/22 Test Results On Monday, Mack had his most recent ECHO after two of his three pulmonary hypertension (PH) medicines had been weaned off. Clinically, he was looking really good, so hopes of the ECHO coming back with lower pressures and affirmation that we're heading in the right direction filled our thoughts. We didn't get a call until late Monday night about his ECHO, and the doctor told us that some of the results were inconclusive and hard to read. The next morning there was more to the story, and they had discovered a pulmonary vein looked stenosed. A quick anatomy lesson for Macklin's case is that pulmonary hypertension is a condition where the blood vessels going into the lung from the right side  of the heart are thick and muscular creating difficult flow and circulation of the blood, thus causing strain and extra work on the heart. This most recent ECHO revealed that one vein that leads  out of  the lungs to the left side  of the heart is also thic...

 7/30/22 See You Later Bay 1 Macklin officially graduated out of the Bay 1 area of the NICU! Bay 1 is for the most critical babies who need the most care, intervention, and one on one nursing. We have now moved to Bay 2 where Macklin shares a nurse and the rooms are half the size, but it also means we are one step closer to going home. It was bittersweet leaving Bay 1. Macklin spent the first 50 days of his life there, and we got to know all the nurses and doctors so well. It became a new family and support system for us as we navigated through many unknowns. We will never be able to thank our Bay 1 family for all they did to save and support Macklin's life. Goodbye Medicine Over the last week, Mack has been on the journey to drop two of the medications he was on to help with his pulmonary hypertension (PH). Both of these were drugs we could not go home on. First he weaned of the Epo, and we could tell he noticed this coming off as his blood-oxygen level dipped a little bit. Quickl...

 7/23/22 After the Wait    The past week has been full of patience and waiting for the results of Macklin's most recent ECHO to come through. This in-depth view of his blood flow and heart helps the doctors determine how his pressures are doing and what the next steps are for his care. We got a call about the ECHO on Thursday, and although it wasn't great news, it wasn't terrible news either. The pressures in the right side of his heart had jumped up by 20 which is not the direction we want to go. Interestingly, they did not see that it was due to resistance  (which is primarily a pulmonary hypertension (PH) issue) but rather flow. Flow  is primarily linked to Mack's Vein of Galen (VOGM) issue, so hearing the word "flow" again brought back some scares. In talking through it with the doctors, they do not see abnormal flow due to his VOGM, but rather they suspect that the EPO drug he was on for his PH was doing too much and creating a higher flow than needed, as...

 7/16/22 No News Is Good News We're sorry for the long time in-between posts, but not much has been happening with Mack when it comes to intervention and care. This is a good place to be in compared to the action-packed weeks of surgery and life-saving moves, and it's a hard place to be in because our time with our son is spent waiting in the NICU instead of at home. We've been blessed that many prayers have been answered, that his interventions have worked, and we continue to pray that this course of action continues as we move forward and try to find a way home. Steady The best word to describe our current status is steady. Mack is making steady progress forward, the drugs are working steadily, and we both feel steady right now as parents. This journey feels like we're riding blind in a kayak. When we first started, it felt like we were thrown into rapids with no training. We were thrashed back and forth, flipped upside down, and somehow came through the rapids ride-s...