Today is Beckham’s Heartiversary from his 3rd and most terrifying open heart surgery. We typically recognize his 1st Heartiversary (which is in October) with cake and a celebration. But this Heartiversary is just as meaningful. This whole week is always an emotional one, filled with tears, PTSD, and thankfully overwhelming joy and gratitude for where we are today. It’s not lost on me that things could’ve turned out very differently. I’ve seen it happen to other families too many times. I rarely let my mind go there because the pain is too much to handle even thinking about losing our Beckham. The few times I’ve allowed myself to drown in those fears I experience major panic attacks. Even typing this out my anxiety is skyrocketing. Losing a child is without a doubt every parents worst fear. Having a child with complex CHD brings that fear far too close for comfort. But then I try and remind myself that no one is promised a long and healthy life. People die every day in horrible car accidents and in a thousand other heartbreaking ways. And this reminds me why we try our best not to take one day for granted.
Beckham has taught us one of life’s most important lessons. To live and love to the fullest. Are we perfect at it? Absolutely not. Do we try our best? Yes. When the boys are driving me nuts and Beckham is not listening I get frustrated, tired and burnt out just like every other parent. But often only a few hours later I’ll look at him, get a flash of his scar, and my eyes fill up with tears as I remind myself just how special he is. And how lucky we are to have him. I love both of my boys with every fiber of my being. Beckham having CHD does not mean I love him more than Hendrix, who is currently healthy. I want to make sure they both know that. They are loved equally and each to the fullest. I genuinely feel like the luckiest Mom in the world to have my boys. As I’m sure many of you can relate to feeling about your own babies. But Beckham’s CHD does bring to light just how fragile his life, and life in general, truly is.
I still remember his surgeries so vividly. April 26th, 2018. Checking in at 6:00am, handing him over at 7:30am and saying our see you laters. Phone calls every two hours with updates. Spending the day barely surviving and anxiously awaiting each next phone call. I’m not one who can sleep or rest during procedures. I literally cannot allow myself to sleep. His last heart surgery was 21 hours long. I think at one point I couldn’t keep my eyes open and maybe slept for 15-20 minutes. But that was it. The day turned into evening. Everyone in the waiting room went home. There was no longer anyone working to provide updates. We had to call the operating room nurse ourselves for updates. The evening turned into night. Night turned into the next morning. All the while my baby was enduring one of the longest surgeries possible. He spent over 15 and a half hours on bypass. I remember a few days later one of the residents made a comment to us about Beckham and his nine hundred and something minutes on bypass. Like everyone knew how long he was on it down to the minute because it was such an extreme.
I believe it was around 4:30am the following day, Friday, April 27th, when Dr. Hanley was finished performing a miracle. Sitting and waiting in the consult room for him to come and talk to us about how everything went is somehow one of the hardest parts of surgery. It’s like after 21 hours of waiting, that last 30 minutes is excruciating. The room is always cold. I’m always shivering, shaking, barely coherent. When Dr. Hanley finally gets cleaned up and comes to knock on the door I always jump and my heart stops. I can barely breathe as I wait for him to tell me what happened. At this point I know that my baby is alive but I almost can’t believe it until I hear it from his lips. Dr. Hanley was the first to say that Beckham is a fighter. That our sweet, strong, perfect little boy is “up there with the most difficult of cases” but he fought to get through it. None of us were that surprised to hear that Beckham had to be placed on ECMO (again). Although this time it was even worse because he was on VA (heart and lung) ECMO. Dr. Hanley informed us that these next few days would be critical. But he remained positive that Beckham would likely fight and make it through this.
After consulting with Hanley we waited to see Beckham. It took hours for them to stabilize and tranfer him from the OR to the CIVICU. I refused to rest until I could see him with my own eyes. I honestly don’t remember what time we were finally able to see him, but I know it was after 7:00am the following day – based on my facebook timeline of updates. Seeing our child with his chest left open, on an ECMO circut taking blood out of his body, circulating and oxygenating it mechanically outside of him, and pushing it back in, multiple IV towers, and a whole team of doctors, NP’s, PA’s, RT’s, and nurses all monitoring and watching him closesly is not something we were foreign to. But it felt much more extreme this time. His swelling was MUCH worse than it had been after his first surgery. Once we were finally able to see him we went to our sleep room in the hospital. We rested for maybe an hour or two before we received an urgent call to come back to Beckham’s room. He was suffering from severe and uncontrollable bleeding. To this day I do not know how many blood transfusions Beckham has had. But I remember seeing them give him bag after bag of blood that day. The next 24 hours was a blur. Going back and forth between trying to rest in our sleep room and being woken up by phone calls, or even once banging on our door, due to the dire situation. We barely slept or ate anything over almost 48 hours. They were about to take Beckham back to the OR for emergency surgery to see if they could find the source of the bleeding. I had to see my baby first. The surgical PA took me gently, helped me walk around all of the machines, tubes and wires, holding my hand tightly the whole time, while I kissed my baby’s hand and reminded him how strong he was. We were taken into another dreaded consult room to discuss what this would entail, and all of the terrifying risks that came with it. After the consult we both broke down yet again. But to our surprise about 30 minutes later they came back in. Apparently the bleeding had finally slowed down. Enough that they no longer felt the risks of emergency explorative surgery were worth it. Instead they would continue to closely monitor him and have the OR on standby. Thankfully the bleeding continued to slow and things were improving. With the bleeding stopped his chest began to form large blood clots. These clots were weighing down and putting pressure on his hearts, and beginning to clog his chest drain tubes. At 3:00pm on Friday, April 28th they set up his ICU room as an operating room and did a “chest washout” meaning they irrigated/washed out his chest and removed all of the clots they could find. This procedure did come with it’s own set of risks, including more bleeding, but thankfully it went well. It seemed fairy straight forward and simple compared to what he had already been through.
We finally thought we were going to catch a break until we found out there was seizure activity on Beckham’s EEG. They ordered a CT scan and we were devestated to learn that Beckham had suffered a stroke on the right side of his brain. To make matters worse, they had to take him off heparin immediately due to the risk of brain bleeds. When your blood supply is circulating through plastic tubing outside of your body, you have to be on a medication called heparin (a blood thinner used to prevent blood clots). Heparin now posed an even higher risk of causing a life threatening brain bleed. After stopping Heparin we needed to get Beckham off ECMO as soon as possible. Post op recovery is always such a balancing act, but this was a much scarier version of that. They quickly made weans on his ECMO machine to see if Beckham’s heart and lungs could handle taking back some of the work. As a point of reference, Beckhams very first heart surgery was 16 hours long, and he required the ECMO machine for 7 days before his body could handle coming off. We were now dealing with forcing his body to come off ECMO less than 48 hours after a grueling 21 hour surgery. By 6:00pm on Saturday, April 28th, he had already tolerated going from 100% ECMO support down to 40%. This was a very promising sign but Beckham still had a lot of work to do. The nurses were so gentle with me as they helped me see the positive signs that Beckham was proving to show. By 11:00pm Beckham was completely off ECMO and they performed the procedure to remove the ECMO cannulas coming from his chest. Things were not perfect and the numbers were not ideal, but they were acceptable and manageable. We finally got our first real night of sleep that night. No terrifying phone calls. No banging on our door to wake us up. No scares. Just rest while Beckham’s body continued to rest and heal.
April 29th, 2018 was Beckham’s first birthday. He was in the CIVCU, 48 hours post op, intubated, sedated and medically paralyzed, brusied, severely swollen and had his chest left open. We were surprised to be woken up that morning with a call from his nurse, letting me know that nothing was wrong but they wanted me to “see something” and asking if we could come to his room. Of coures I was worried, but considering the difference in tone and words I knew nothing life threatening was happening. We were shocked and overcome with love as we walked up to his room and saw all of the birthday decorations the nurses had put together. They had a special gold “1” crown for him, balloons, signs, and beautiful birthday notes on his door. The nurses at LPCH are truly phenomenal and we consider LPCH to be our “second family”. We continued to receive sweet visits and gifts for Beckham throughout the day and did our best to celebrate him.
You can read more about Beckham’s 1st Birthday in my blog post here:
https://mamaofaheartwarriorblog.wordpress.com/2018/04/30/happy-1st-birthday-beckham
The rest of our hospital stay was a bit of a whirlwind. Just like any post heart surgery recovery we had some steps forward and some steps back. Eventually the swelling went down, they were able to close his chest, he was extubated and he continued making progress as the days and weeks went by. Then the day came when we were able to bring our sweet boy home. Mykel and I were both emotional leaving the hospital on discharge day. It felt surreal to walk out with him in our arms. A moment I will never forget and never take for granted.
This Heartiversary has been especially hard for me. With Hendrix turning one, Beckham’s Heartiversary and Beckham turning three all being within 3 weeks of each other, there are a lot of emotions. My heart hurts for Beckham and all that he has been through in his life. I’m so grateful that he doesn’t remember these traumatic experiences. But I know as he gets older he will have questions. And I will have to navigate how to answer those questions while also trying to protect him. Knowing he will have to endure more surgeries weighs heavily on me. As our family grows I also worry about balancing both kids and making sure they both get the amount of love and attention they need. I know there will be times where Beckham’s health may take priority and hope with all my heart that Hendrix will always know he is just as loved and important. Sometimes I imagine them as they get older being best friends. I hope they confide in each other, support each other, and cheer each other on in everything they do. And if you boys are reading through these old blog posts right now and it’s years later – you better be the best of friends!
Today we celebrate two years since Beckham’s last surgery. Two years of growing, learning, walking, running, and enjoying life to the fullest. Beckham has made such incredible progress and you would never know all that he has been through just by looking at him. We are so proud of him and all of his amazing accomplishments. We are thankful for the friends we have made along this journey. Many of which we wouldn’t have had the opportunity to meet without the impact of CHD in our lives. We are so thankful for the support we’ve received along the way. Thank you to our amazing friends and family. Thank you to our parents who were with us in so many of these terrifying moments. And we are forever grateful to each and every Nurse, Doctor, PA, NP, RT, Social Worker, Anesthesiologist, Surgeon, and everyone in between who has cared for Beckham. These medical professionals who continue to work every day and save lives through pandemics. In celebration of Beckham’s Heartiversary we made a few small gifts to send to the Nursing Staff, Medical Team and Dr. Hanley. Nothing big but just a small token of our gratitude and to remind them how much we appreciate them. Thank you again to everyone who has loved, supported and helped us through this journey. Most of all, thank you to Beckham for being the incredible and strong Heart Warrior that you are. We love you with all our hearts Bubba.
Xoxo,
Heart Mama
Mama of a Heart Warrior 