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December
31
2020

Happy 1st Birthday, Beau!

1 year old today. Not every birthday is created equal. We have lots of “big birthdays” in our lifetime, but what about “1”? What about when having a birthday at all seems like anything but a sure thing. 365 days ago, Beau had just arrived into the world, our first child that was such a long time coming. Everything was perfect. We had no idea what was in store for us starting just 36 hours later. As I think back on the past year, it seems in some ways like a lifetime, yet also seems so fresh and raw. That feeling of pure joy that turned in an instant into a feeling of shock, of helplessness, of fear; it imprints on your soul and you never forget it.

But I also think back on this year, and think just what an amazing example of the grace and power of God. 2020 will be to most everyone remembered as the year of COVID. For us it will always be the year of Beau. So many answered prayers, so many obstacles overcome, so many “God moments” to get us to where we are now. If you doubt God has a plan, just take one look at Beau. To say it’s humbling wouldn’t do it justice. 

As I look at this happy, healthy (98th percentile big boy type healthy), smiling 1 year old baby boy in front of me, I can almost sometimes forget that he has only half a heart in his chest. He has overcome in 1 year of life more than most will in an entire lifetime. I’m so proud of his fight, and admire his just pure zest for life. It’s almost as if he knows how lucky he is to be here. We sure know how lucky we are to have him.  

Since the last post, we have been blessed to really be able to enjoy some much needed “normal life” with Beau. He continues to do just fantastically well, even better than we could have ever hoped for at this point. He’s aced every cardiology checkup he’s had, which have all included a repeat ECHO to look at his heart and the new shunt they created during the last surgery. We are spaced out to 6 month appointments now. He’s down to only 2 medications, Digoxin for his heart rhythm, and aspirin for a blood thinner. Pretty soon he will outgrow the Digoxin, and then only be on aspirin from here on out. A far cry from the banks of medication pumps we had stacked up in the ICU. He’s no doubt gotten the tall genes from his dad, and is now up weighing over 24 lbs. He’s gone from not even registering on the growth chart during his first post-hospital visit to the pediatrician, to now in the 99th percentile for height, and the 75th percentile for weight. I’d say he caught up. 

It’s been really amazing to watch him grow and discover the world. He has a big personality, and smiles more than just about any baby I’ve seen. We have entered full mobility phase, and he crawls just about everywhere, but may be close to taking those first few steps any day now. That’s a scary thought, as he’s all boy, and into absolutely everything. We may definitely have some ER trips in our future, that have nothing to do with his heart. He loves his dog sister Marley, but also harasses her 24/7. He’s a big fan of his toys, but given all the toys he’s acquired over Christmas and his birthday, I may need to go ahead and build a new wing for our house. 

He’s finally gotten to meet his entire extended family now. He’s made several trips to see his 3 great-grandparents. He got to spend 2 weeks at the beach this summer, including one with his whole family and his cousins. I think he definitely has the love of the beach gene from his parents. He’s lucky to have both sides of his family in town, so there’s never a time that a grandparent isn’t ready and willing to scoop him up for a few hours. All his family including grandparents, aunts and uncles, and cousins were able to be there today to celebrate his big day, which was very special for everyone. 

So where do we go from here? Well, “boring” is good, and boring is the goal at least from a medical standpoint, but I’m pretty sure Beau will keep our lives anything but boring. He will continue with his cardiology checkups with Dr. Maggie, to ensure everything is still looking good and on the right track, but other than that next thing on the horizon for him will be his final planned surgery. This is called the Fontan, and will be done sometime around 3-4 years old. We will likely have some flexibility in deciding when that is, so that will be good. Until then it’s full steam ahead as a growing boy. 

It’s really hard to believe it’s been a year...man what a year. To think back about the day he was born, then to the storm that we were about to walk into that we had no idea was coming, then through 2 open heart surgeries, then to watching him open birthday presents today...just wow. Truly all the glory to God. To think back to our friend Gabe praying Ephesians 3:20-21 over him 363 days ago as he laid in the peds cardiac ICU, unsure of what the future held or if he even had a future, there is no question that the truth in that verse carried him through, and carried all of us through. God indeed did “far more abundantly than all that we could ask or think."

I never ever want to relive this past year, but I also would never trade it because of all that it taught us, and the amazing gift that it brought us sitting here 1 year later. We continue to be so humbled by the love and prayers for Beau by so many people. Thank you! We look forward to celebrating many birthdays to come! 

 

Michael, Leah and Beau

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July
1
2020

Last update, for a while!

Well today Beau is officially 6 months old, and it’s also exactly 1 month since we got home from the hospital from his last surgery. Hard to believe, on both accounts. Time really does fly, and when I think about all that’s happened in the last 6 months, it really does feel like a lifetime. Let’s hope the next 6 months aren’t quite as adventurous as the last...

Although we were excited to be able come home from the hospital as early as we did, we were not fully prepared for all the challenges that came with him essentially recovering from surgery at home instead of in the hospital. During his first surgery, he was intubated for a week, and also sedated with IV pain meds for even longer than that. So by the time he was fully awake and alert, he was probably 2 weeks out from surgery, and had probably already gotten through most of the acute recovery part. Not to mention he weighed 7 lbs, not 17, and was pretty much non-mobile. All of that was not the case this time. The first 10 days were pretty rough, to put it lightly. I think it was a combination of the headaches from the increased pressure, his soreness from surgery, and just a general agitation from going through it all. He had periods where he would just go from totally fine to freaking out, and be basically inconsolable. We tried every trick in the book and and it didn’t matter. To put it bluntly he was just pissed...a lot. Throw in the fact that he would only sleep about an hour at a time, and it made for a very long 10 days or so. Thankfully, it gradually all subsided, and he was back to his baseline normal self after about 2-3 weeks. 

Otherwise he’s done fantastic. He’s had several follow up appointments with cardiology, and so far everything has been an A+ report. His new connection from his SVC to the pulmonary arteries looks wide open, and his overall heart function looks great. He goes back this Thursday for one more, and then we really start spacing them out. He’s up to 17 lbs now, which is crazy, and is getting rolls on top of his rolls. He’s just about able to sit up by himself now, and is always trying to talk. It’s really been amazing to watch him grow and thrive, given all that he has been through. Our only request of him would be to start sleeping through the night, or closer to it. That’s unfortunately one area that we aren’t back to normal in, but we’ll get there, we certainly don’t have anything to complain about. 

This COVID stuff is a pain, as I know it is for everyone, and we are just still trying to figure it all out as far as what’s reasonable and what’s the best thing to do. After all we went through the last 6 months we were so looking forward to getting through this surgery and then being able to get him out and getting to see people. To have this pop back up again right when we thought we were good to go is certainly kind of a kick in the gut. The good news is he’s certainly in a much better and safer condition now than he was before the surgery, and it also seems that the virus has very little risk to children, either of them catching it or getting very sick from it. We certainly are still being as careful as possible, but hopefully soon this too will pass.

Overall we just feel so thankful to be where we are, and to see the happy healthy boy in front of us. It truly is an incredible answer to prayer, so many prayers. I look back through all the pictures on my phone and just almost can’t believe it. God is indeed so good, and must have some really big things planned for Beau. We will enjoy this time that we have now, as we know we aren’t done yet, but for the first time don’t have something big coming right on the horizon. His 3rd and hopefully final surgery will most likely be when he is around 3-4 years old. He will continue to obviously have scheduled follow ups with cardiology to monitor his progress, but until then we can relax and enjoy life, and we can’t wait. We are actually headed to the beach in a few weeks for the first official trip of any kind since he was born. This will probably be the last update that we will post for quite a while, although we certainly hope to see everyone in person soon and let Beau meet all the amazing people that he’s had praying for him and in his corner for the last 6 months. Thank you all so much for walking with us and beside us on this journey. 

Ephesians 3:20-21

Michael 

July
1
2020

Last update, for a while!

Well today Beau is officially 6 months old, and it’s also exactly 1 month since we got home from the hospital from his last surgery. Hard to believe, on both accounts. Time really does fly, and when I think about all that’s happened in the last 6 months, it really does feel like a lifetime. Let’s hope the next 6 months aren’t quite as adventurous as the last...

Although we were excited to be able come home from the hospital as early as we did, we were not fully prepared for all the challenges that came with him essentially recovering from surgery at home instead of in the hospital. During his first surgery, he was intubated for a week, and also sedated with IV pain meds for even longer than that. So by the time he was fully awake and alert, he was probably 2 weeks out from surgery, and had probably already gotten through most of the acute recovery part. Not to mention he weighed 7 lbs, not 17, and was pretty much non-mobile. All of that was not the case this time. The first 10 days were pretty rough, to put it lightly. I think it was a combination of the headaches from the increased pressure, his soreness from surgery, and just a general agitation from going through it all. He had periods where he would just go from totally fine to freaking out, and be basically inconsolable. We tried every trick in the book and and it didn’t matter. To put it bluntly he was just pissed...a lot. Throw in the fact that he would only sleep about an hour at a time, and it made for a very long 10 days or so. Thankfully, it gradually all subsided, and he was back to his baseline normal self after about 2-3 weeks. 

Otherwise he’s done fantastic. He’s had several follow up appointments with cardiology, and so far everything has been an A+ report. His new connection from his SVC to the pulmonary arteries looks wide open, and his overall heart function looks great. He goes back this Thursday for one more, and then we really start spacing them out. He’s up to 17 lbs now, which is crazy, and is getting rolls on top of his rolls. He’s just about able to sit up by himself now, and is always trying to talk. It’s really been amazing to watch him grow and thrive, given all that he has been through. Our only request of him would be to start sleeping through the night, or closer to it. That’s unfortunately one area that we aren’t back to normal in, but we’ll get there, we certainly don’t have anything to complain about. 

This COVID stuff is a pain, as I know it is for everyone, and we are just still trying to figure it all out as far as what’s reasonable and what’s the best thing to do. After all we went through the last 6 months we were so looking forward to getting through this surgery and then being able to get him out and getting to see people. To have this pop back up again right when we thought we were good to go is certainly kind of a kick in the gut. The good news is he’s certainly in a much better and safer condition now than he was before the surgery, and it also seems that the virus has very little risk to children, either of them catching it or getting very sick from it. We certainly are still being as careful as possible, but hopefully soon this too will pass.

Overall we just feel so thankful to be where we are, and to see the happy healthy boy in front of us. It truly is an incredible answer to prayer, so many prayers. I look back through all the pictures on my phone and just almost can’t believe it. God is indeed so good, and must have some really big things planned for Beau. We will enjoy this time that we have now, as we know we aren’t done yet, but for the first time don’t have something big coming right on the horizon. His 3rd and hopefully final surgery will most likely be when he is around 3-4 years old. He will continue to obviously have scheduled follow ups with cardiology to monitor his progress, but until then we can relax and enjoy life, and we can’t wait. We are actually headed to the beach in a few weeks for the first official trip of any kind since he was born. This will probably be the last update that we will post for quite a while, although we certainly hope to see everyone in person soon and let Beau meet all the amazing people that he’s had praying for him and in his corner for the last 6 months. Thank you all so much for walking with us and beside us on this journey. 

Ephesians 3:20-21

Michael 

May
31
2020

Update...Maybe going home soon!

Well, the last line of the post I made after surgery proved to be pretty prophetic. Dr K came in on rounds this morning, and said “He looks fantastic, maybe home tomorrow”.....ummm what?! At first I thought I misheard him, or had my days mixed up. But turns out there is indeed a good chance that Beau goes home tomorrow, 4 days after open heart surgery, simply amazing. 

The first 48 hours after surgery were, rough, really rough. He was in a lot of pain, both from his incision and chest tubes, as well as his probable headache. He required lots of doses of pain meds, and really just stayed very agitated and unconsolable while he was awake. When I got to the hospital early Saturday morning to relieve Leah, they both looked like they had been through a war. Leah was exhausted, and poor Beau had scratches all over his face from where he was pulling at his oxygen tubing. It looked like he had been in a 10 round fight with a raccoon. I would have wagered a lot of money at that point that we would not be going home 2 days later. But Saturday morning he really made a drastic turn for the better. Dr K came and was able to go ahead and take his chest tube out, and they were also able to removed the IV lines from both his groins a little later. Within about 3 hours he seemed much comfortable, and alert, and much more like his normal self. The swelling around his face and chest also went down dramatically. It really was an overall striking turnaround. 

The rest of yesterday and through last night he did great. We were able to start holding him, and get him up and moving around. They also came and did an ECHO, to assess how everything looked after the surgery. He got an A+ report on that, with all the vessels being wide open with good flow, and his heart function looking totally normal. After rounds this morning, Dr K said he was really happy with how everything looked, and was amazed at his quick recovery. After rounds we were moved from PCICU down the hall to a normal step down room, and Dr K said as long as the rest of today went well, that he would feel confident he would be ready to go home in the next 1-2 days, but very possibly tomorrow. This was honestly shocking to us, as although we were hoping he would have a short-ish hospital stay based on how he did last time, we were fully prepared for a 7-14 day stay like they had told us was the norm. Little dude has certainly made a habit of beating the odds.

We will see how the rest of today and tonight goes, but either way it seems we are really close to busting out of here, certainly much earlier than expected. What a testament to answered prayers. We feel so thankful and fortunate that he has done so well, again, and that God has carried him through all this the way that He has. Everything going smoothly is never guaranteed, especially in a situation like his. I’m just in awe of this little kid and all that he has gone through and overcome already. He’s a warrior, no doubt about that. We will certainly let everyone know when we get the official word that we will be headed back to Columbia. Thank you for all the prayers, they were certainly heard! 

Michael

May
29
2020

Post Surgery Update

Well, the hard part is over. The last 48 hours feels a lot more like 248, but we made it. Beau’s surgery was a success yesterday, and as we expected he would, he made it through it all like a champ. 

For anyone what is curious about the details, here’s basically what they did yesterday: Really overall they were basically rerouting his blood circulation. There were 2 main things that they did to accomplish this:

1. Remove the shunt that they placed during his first surgery that ran from his right ventricle to his pulmonary arteries. When they did that they also patches up the holes where the shunt was

2. Take his superior vena cava (SVC), and move it from where it normally connected to the right atrium of the heart, and over to connect it directly to his pulmonary arteries 

So basically, beforehand the way he got blood to his lungs was by his heart pumping it through the shunt, while at the same time pumping blood out to the rest of the body. Now the way will be by blood flowing directly from his SVC (which brings blood back from the head/neck/upper extremities) and into the lungs. It will then get oxygenated, and then return to his heart. This is a much more “normal” circulation, although his circulation won’t be completely normal until after he has his 3rd surgery, which won’t be until he is likely 3-4 years old

It was a long surgery, as they took him back around 6:30 am, and he came out of the OR about 2:30 pm. We were finally able to go see him about an hour later. He’s swollen and puffy, with several lines in, including a chest tube, and catheters in both his groins and hands, but not nearly as many as he had after his first surgery. Also, his chest was closed up in the OR, as opposed to remaining open like last time. We met with Dr K, he said everything went great and according to plan. His did have a few short episodes of SVT (the arrhythmia he had briefly right after his last surgery), but he said that he wasn’t surprised by that. They will just keep him on some medication for it for the time being. Otherwise he said all his anatomy looked great, his pulmonary arteries and SVC were well developed a wide open and easy to connect, and they patched up the hole from the shunt without difficulty. Overall said he was super pleased with how things went, and expects him to do really well. 

Last night was a little bit rough, as they decided to leave his breathing tube in overnight to let his lungs rest a little bit more and make sure all the bleeding stopped. He was not a fan of this at all, as nobody would be with a tube down their throat, but they gave him some more sedation to help make him comfortable. Thankfully, first thing this morning they were able to take his breathing tube out, and he has done perfect without it ever since. The plan will be to just continue to let him rest, and slowly wean off the sedation and other medications throughout today, so that hopefully by tonight he’s awake and off most the major meds. Also over the next few days most of those lines and tubes will be able to come out. One thing they told us to expect is that he will probably have a pretty good headache for a while. This is because when they reroute the blood flow, it causes a little bit of increased pressure in the head and neck blood vessels, which causes the headache. These pressures will normalize over time, hopefully sooner than later, and the headaches will go away. 

Overall we couldn’t be happier with how everything went. Beau has been a warrior, and they said that given how big and healthy he is, they expect him to bounce back and recover very quickly. It’s funny to see all the nurses and doctor’s reactions when they have seen him for the first time, they literally cannot believe how big he has gotten since we were here in Jan. I’ve lost count of how many “What are ya’ll feeding him!?” comments we’ve gotten. We were looking back yesterday at the pics from his first surgery, and we almost forgot how tiny he was for all that. It’s truly amazing how far he has come. 

Thank you to everyone for all the texts, comments, and prayers yesterday. To know that in addition to us, he literally had hundreds of people praying for him was such a comfort and source of strength. I’ve always felt totally at peace going into his surgeries, and there’s no doubt that’s a big reason. Beau walked through a big fire yesterday, but he was carried through it by God and the prayers of so many. We are so thankful and humbled by another huge answered prayer. We will keep everyone updated on his progress and the timeline of his hospital course, if I know Beau he probably doesn’t plan on staying here long...

Michael and Leah 

“But now thus says the Lord, he who created you: “Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.”

‭‭Isaiah‬ ‭43:1-2‬ ‭ESV‬‬

May
26
2020

Letter from Leah

Two days. Two days until surgery. I feel like the date is closing in on me like the walls on a Nintendo game I use to play with my brother and cousins. The thought of handing Beau off to the anesthesia team on Thursday nearly paralyzes me. The moment they took him away for the Norwood operation was the hardest moment I’ve ever experienced. I loved that 8 day old baby more than anything. But over these past 5 months I have fallen IN love with him. Seeing him grow and change has been yet another miracle to watch. He has this little spike in his hair. It won’t go down. Part of me hopes it never does. He has the biggest, brightest eyes that absolutely melt me....even at 3am. The dimple in his chin. That is my Dad’s chin. Another strong-willed warrior who we said goodbye to 30 years ago. He is usually a happy, smiling baby but he has this little fire in him.....a fire I’m certain he did not inherit from Michael :) I’d say a little fire is necessary considering all he has been through!

Oh how I wish we could continue on (minus the quarantine) with life and not have to go through another surgery. This is the path the Lord is requiring us to walk. It is also the path He is so graciously allowing us to walk. Most medical professionals would have doubted that the baby flown to MUSC on New Years morning would be a robust 15 pounder ready for the Glenn operation.  It is humbling to think that the Lord saw fit to entrust us with Beau. To give us a front row seat to witness miracle after miracle in Beau’s life. For that I am so grateful. It all really comes down to one thing. Trust. Do I trust the Lord to take care of Beau? Do I trust that His will for Beau is far better than anything I can conjure up? Yes, I do. He has proven his goodness over and over again.

Please continue to pray for us over these next few days. It is so comforting to know that so many have and will continue to go to the Lord on our behalf. We are SO ready to get to the other side of this surgery. We can’t wait to introduce Beau to so many family and friends that he has yet to meet. Honestly, I’m just excited to cruise the aisles of Publix with him in the cart!

We have been overwhelmed by the outpouring of love from our family, friends, and even strangers since January. I could write a book on all the different ways people have reached out to us. I could write another book on Beau’s medical team. From Columbia to Charleston, they have all been amazing. Thank you doesn’t seem sufficient. We plan to post updates on Beau’s progress, but for now, we will press on, fully trusting the Lord with our boy.

Michael and I had the same idea about putting our thoughts down before the second surgery. Sorry for back to back posts!

Leah


“Faith is living in the light of what God has said, resting in what he has done, and entrusting the future to his care.” Paul Tripp, New Morning Mercies

“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight.” Proverbs 3:5-6

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.” Philippians 4:6-7

May
26
2020

Pre-Surgery Post (Letter from Michael)

Well although it’s Memorial Day, and I wish we could all be on a beach somewhere, more importantly for us it’s officially Beau’s surgery week, again. The process will begin early Wednesday morning, when we will load up the car and head down to Charleston to MUSC for his pre-op workup day. Throughout that day they will do a multitude of things, included a CT of his heart, another Echo, blood work, all to get an overall picture of how he his doing, and to plan the specifics of what they will do during the surgery the next day. Then it’s home for the night, followed by a 6 am arrival on Thursday morning the 28th for his surgery. His is the first case scheduled for the day, so he will probably be rolling back around 7:30 am. It’s overwhelming to think about gearing up to go through this all over again, although certainly much more planned and with hopefully less unknowns and sheer terror than the first time around. The range of emotions is wide, and although we are anxious and nervous, we are also excited, as we know what a huge step this is in both his life and ours. A much more normal life awaits us on the other side, and we can’t wait. 

 

I’ve had a lot of things on my mind over the last several months as I’ve reflected on our lives since 12/30/19, and I wanted a chance to sit down and try to put those thoughts into words, for myself as much as than anything. I figure I would also share them, for anyone that may be interested and has followed Beau and us on this journey. This part will probably be long, so if you want to stop reading right here, I would totally understand! Either way, here it goes…

 

Perspective, and Humbling

 

Those are the 2 words that have come to my mind the most when thinking back over the last almost 5 months. Both those words can mean very different things to different people, and much of that is based on life experiences and can even change over time, I know they certainly have for me. 

 

Perspective - Our lives were totally changed twice within a span of 36 hours on Dec 30th-31st, 2019. We first experienced the pure unmatched joy of the birth of our first child around 6 pm on Dec 30th, and everything seemed perfect. Only a little over 24 hours later, that joy would turn into a fear and pain that we could have never imagined, and certainly never expected. I don’t think that I could ever adequately describe what that swing of emotions felt like, and I pray to God that I never have to experience anything else close to it. The night everything happened, without any warning or planning, we totally dropped everything and left our lives in Columbia behind and drove/rode in a helicopter down to Charleston. We had no idea how long we would be there, or what life would look like for us when we returned. Those 5 weeks, and every day since, have certainly changed my perspective on a lot of things. 

 

First and foremost, life is so precious. It’s an obvious statement, but one that I think we all take for granted every day. It’s a shame, but it’s often only tragedies that really make us stop and remember that. For example, the Coronavirus pandemic, things like that certainly made people stop and really think about it, but what about all the days in between when we forget? People expect that when you go to the hospital to have a baby, you will just return back home several days later with a happy healthy newborn. 99% of the time that indeed happens, but sometimes it doesn’t. There’s no preparing for it, there’s no instruction manual. Life just happens and you have to react to it. My Mom taught me when I was young, that life is 10% about what happens to you, and 90% about how you react to it. The older I’ve gotten the more I realize that absolutely to be true. None of us are guaranteed another day on this earth, and while I certainly don’t think that means to live in fear, it’s important to remember that. Life is short, so tell people you love them, and take nothing for granted. We cherish every day and every moment with Beau even more now, because we truly know how close it was to being taken away before it ever got started.

I think we all like to think of ourselves as important, as busy people who have so much to do, and so many things and places that we just “have to” be at. I know I did. But I realized something those 5 weeks in Charleston, I’m not that important after all, at least not in the way I thought I was. I don’t mean that in a bad way, more in a good way. We left our lives Columbia in the middle of the night literally on a moment’s notice. But over those 5 weeks, life went on back home without me just fine. There were no social events that I missed that really mattered, no sporting events that were crucial for me to be at, the radiology dept at the hospital ran just fine without me there. All the things that were “important” on a daily basis all of a sudden weren’t important at all. Everything that was important was in the PCICU at MUSC, and that’s all that mattered. I would never choose to learn that life lesson that way, but it was a good life lesson nonetheless. It’s certainly changed the way I look at life...Perspective.

 

Humbling – Boy does God and life have a way of bringing you to your knees in a hurry. I think that there are so many strong emotions and feelings when something like this happens, and consequently there are so many different ways in which one could react. Fear, panic, anger, thankfulness, love, confusion. All of those would be very appropriate and understandable emotions and reactions to have, and none are right or wrong. I probably had them all at one time or another. Personally, I chose not to focus on the negatives, or the why, but instead on positives and what was in front of us, and the many small victories that we needed to string together to get to where we wanted to be. But for whatever reason, one emotion that I felt as much or more than any others was humbled. 

 

Initially, I felt humbled in the sense of I realized how not in control I was. Ive never felt so small or helpless as I did driving by myself as 4 am down I-26 to Charleston on the night everything happened. Id just gone from planning on bringing my new son and wife home from the hospital, to hearing he might not live. I broke down and prayed out loud in my truck the whole way down, begging God for help, pleading with him to intervene and save Beau. I had never in my life done that before, I had never NEEDED God the way I did at that moment. There was literally nothing I could do, and the reality of that was heavy. I was his dad, although very new to the role. I wanted to fix things, I couldn’t, I wanted to protect him, I couldn’t. As we held him early the morning before his first surgery, I kept thinking about what was about to happen, and how powerless I was to do anything, it was totally out of my hands. I was entrusting his life to a man I had only met a few days before in Dr. Kavarana, and praying God would give him the strength to perform an incredibly complex 8 hour surgery, that even as a doctor myself I can hardly even fathom. As a man you always want to feel in control, and like you are strong, and can handle anything that comes your way. When you realize that you are in a situation where you are anything but in control, that is humbling.

 

We have been, and continue to be so humbled by the incredible outpouring of love and support and prayer for Beau, and for us. It’s really been something that is amazing to see and to feel from our standpoint. From family, to friends, to people we don’t even know, it’s been truly incredible. I felt guilty initially for not being able to respond to everyone’s texts, and phone calls, and messages, but then I realized people really just wanted us to know that they cared and were praying for Beau. I saw the other day where there have been over 39,00people who have visited his Caring Bridge page! I don’t even know 3,900 people, much less 39,000. That’s just overwhelming to think that that many people truly care about my son, about a boy who for many of those people they may never even meet. When they say it takes a village, I guess that’s what they mean, because he has one heck of one. I could go on for pages about all the amazing and thoughtful things that people have done for us and for Beau. Really all I want to say is THANK YOU, for everything. It all means more to us than you know, and we will never forget it. There’s a saying that you can judge a lot about someone by their friends; well if that’s the case I feel pretty good about where we stand! We really are truly blessed to be surrounded by the people that we are in our lives

 

Lastly, throughout all of this I’ve just been continually humbled by the grace of God. From Leah getting pregnant after years of trying, to him being born, to him being on death’s door and making a miraculous recovery to the point where he could even have surgery, through the surgery, and then throughout his recovery since, God has just showed up time and time again, and answered prayer after prayer. It would be easy to say “what have we done to deserve to have to go through all of this?”, but I think the better question is; “what have we done to deserve this miracle that we have been able to witness?” The hard truth is that we’ve done nothing. We don’t deserve it, we haven’t earned anything, but yet God chose to answer our prayers and grant us this miracle anyways. What a testament to the definition of Grace. Through a little baby, he changed our lives, and I firmly believe used him to change other lives as well. I watched a community, and the better part of an entire city come together to prayer for a little boy that many didn’t even know. I’ve heard countless stories about the impact that Beau’s story has had on other people and their personal faith. I had friends who I’m pretty sure were not believers call and text me daily to tell me that they were praying for us and for Beau. I’ll never forget one text in particular I got, that said “I admit I’ve never prayed before in my life, but I’m praying as hard as I can for Beau”. Man, that is POWERFUL. 

 

I keep thinking back to the main verse that I’ve carried with me through all of this, Ephesians 3:20.

 

 “Now to him who is able to do far more abundantly than all that we ask or think...”

 

That verse was prayed out loud over him the day he arrived at MUSC, while he was lying in that ICU bed totally unsure of what was going to happen. I don’t think I’ve ever personally seen a Bible verse play out more in real life than that one. God took a tragedy, one of the scariest things you could ever imagine as a parent, and not only did He answer prayer and do far more than we could ever imagine, but through that He turned it into a blessing, and a witness for Him. I look at Beau now, all 15 healthy lbs of him and his smile, and just think “wow, THAT baby has a bad heart that almost killed him?”. It still blows my mind, to think about all he went through, to think about how he looked 4 months ago in that hospital bed all tiny and sick with lines and tubes everywhere, and then to look at him now. If he isn’t a example of the grace and power of God, I’m not sure there is one. 

 

If you’ve made it this far, congrats. I’m sorry if there was a lot of rambling in there. Please pray for Beau and for us as we prepare to step back into the fire. After the last 5 months we know that we can make it through anything. Despite how far he has come, we know that Beau’s journey is not over, far from it. Thursday will be a scary and stressful day, but we know Beau’s got this, and God’s got this. If Beau sticks to his script of beating the odds, we hope to be back home in as soon as a week possibly. After that it’s game on, as we can’t wait to get back out into life and see everyone. Beau probably also needs to realize that a world exists outside of Leah and I, and the house he lives in! Thank you for everyone’s continued thoughts and prayers, and we will certainly update everyone right after the surgery. 


Michael

May
13
2020

May 12th Update

So I meant to write an update right after we got done with the heart cath, but we ended up kind of spreading the news of the results by word of mouth. Here are the details though:

Everything went as well as it possibly could have. It was a long 36 hours for sure, but we made it through without a hitch, other than lack of sleep. Beau handled it like a champ, and was extubated and back awake within an hour of the procedure. He wasn’t the happiest of campers for a while, as the drugs they use to put them to sleep take a while to wear off, and he also was sore and had bandages on both his groins from having to be stuck on both sides for IV access. 

Dr. Rhodes, who is the head of pediatric interventional cardiology, performed the procedure. He came and spoke with us for a long time afterwards, and even brought some pictures he took during the case which were very cool. Bottom line he said everything looked great, from his shunt, to his heart function, to his pulmonary arteries. His shunt was wide open. The function of the right side of his heart, which was a big concern early on after birth, looked totally normal, without virtually any signs of the issues he had before his surgery. His pulmonary arteries looked normal and well developed. Interestingly enough, Dr. Rhodes trained at Duke, and was involved there in research geared specifically towards outcomes in kids with HLHS. He said they found that one strong predictor of outcomes and how kids would do in the long run was their pulmonary artery size at the time of their second surgery. He said their studies showed that the “perfect” size was 16.2 mm....Beau’s were 16.4 mm. So his were 0.2 mm away from “perfect size”, hard to ask for much better than that. He spent about 30 min talking with us, and said he had reviewed Beau’s entire case  He said that after looking at everything and the info from the heart cath, that he expected him to do extremely well. So we were obviously incredibly encouraged to hear that.

About a week after the cath, we got the call that we had been waiting on, informing us that his secondly surgery is officially scheduled for Thursday, May 28th. It’s both a scary and exciting thing, to now have that date out there set in stone. With the memories so fresh from January, we are certainly anxious about stepping right back into the fire again. However, we are also excited, and this is another huge hurdle to clear. The fact that he is ready and strong enough to have this next surgery so soon is such a blessing. We know that on the other side of this surgery is a light, not necessarily at the end of the tunnel, but in the tunnel, that we have been waiting for. After he recovers this surgery we will be able to start living as normal of a life as we have since he has been born. No more being confined to the house, no more having to be isolated from friends and family, and no more high stress that something could go wrong any minute. We can’t wait. 

The general timeline is that we will go down to Charleston on Wed, May 27th, for his pre-op workup. We will return back for surgery early the following morning, and then it’s go time. Thankfully, there are many things about this surgery that make it less stressful and arduous than the first one. They told us total expected hospital stay for this surgery is 7-14 days, as opposed to 8-10 weeks for his first one. Given how fast he busted out of there the first time, we hope he has a repeat performance. After we get home they said to expect 3-4 weeks until he’s back to his normal self. But make no mistake, although less intense relative to the first one, it’s still open heart surgery, and still a huge and risky thing. Feels weird to think about open heart surgery as being “not as big a deal” as before, but it’s all relative. We know he’s going to crush it.

Until then we are gonna just enjoy these next few weeks. Thankfully we have all stayed healthy through this whole quarantine season, so we hope to keep it that way. I’ve been working from home still, and will keep doing that up until his surgery. He continues to get bigger and change so much every day. He’s up to 14 lbs and 26 inches now, climbing those growth charts like he’s in “Free Solo”. His sleeping still leaves a little to be desired, but we’ll take what we can get. If his nighttime party antics are a sign of things to come, I worry about the challenge we face when he gets to high school and college. 

Please continue to pray for him and for us as we approach this next big step. We marvel every day at just the amazing answer to prayer that he is. To look at him now and think about where we were just 4 months ago, it’s both astounding and humbling. God has already blessed us so richly and answered so many prayers, and we have every faith in Him going forward to bring Beau through this next challenge as He has every step of the way.

Michael