James’ Broken Heart Story and How You Can Help
The past few nights I have woken up at 2am from a dream and struggled to go back to sleep for hours. I would just lay there in bed and think about all the things I have to do, all the little tasks and emails and calls that I need to complete that day, all the gifts I haven’t bought yet, all the normal everyday life stuff that comes up. Then my mind drifts away from that to my little boy, lying in his hospital bed hooked up to these machines and tubes and monitors and none of those little things matter anymore. I then find myself thinking much different thoughts, and I cry, and I pray, and I want to get in the car and drive 40 minutes to see him and tell him I love him and kiss him. This is by far the hardest time in my life but it is also a complete miracle that James is here and the impact that he has made on me this year. So this morning, as James turns 2 months old, instead of laying in bed and doing all these things over and over again I chose to come downstairs and pour out James’ story in hopes that I could preserve it in print and also share it with all of you in hopes that it gives you hope in something that you are struggling with. So far, what James has done for me is give me PERSPECTIVE on life! Those everyday struggles that we think are important really aren’t and I need to forget about life’s little things and focus on what really matters. And that may be different for all of us but for me it is family and love. So as I sit here, with tears hitting the keyboard, I want to tell you the story about my family and how we have grown and changed over the past year. And what better time than now for all of us to reflect on what’s important in our own lives and how we can make a change and stop dwelling on the little things and focus on what really matters.
I still remember the day that Lucy looked at me and told me she was pregnant with James, she was so happy and although we weren’t officially “trying” I could tell that she wanted another baby badly. The look that she gave me will be engrained in my mind forever. It was different than the look she gave me when she told me she was pregnant with our first son, Will, but it was one of hope and relief that it had happened again. Everything was fine with this pregnancy until 19 weeks, when we went to a high risk OB’s office after a test came back with some abnormalities. We went in there concerned about one thing and came out devastated about another. After an hour-long ultrasound, the Dr. came in and said “I don’t know how to tell you this, but something is wrong with your babies heart.” The feeling I had at that moment was one of darkness, confusion, uncertainty, hopefulness, but most of all I was just plain scared. I had no idea what that meant or if our baby would be ok. From there we did some more testing to see if we could give the doctors more information on why this had happened.
About two weeks later we returned to the high risk OB for another ultrasound and the results of the amniocentesis we did. Imagine sitting at home for two weeks after being told that your son had a heart condition just waiting. Well, we didn’t expect to hear what we heard at this appointment either. They told us he had some genetic abnormalities and a unique chromosome makeup with a label of Mosaic Ring 13. Again, I will never forget the look Lucy gave me as we sat there in disbelief, unsure what to make of all this and just silent. My heart was somewhere in my feet and I remember just asking myself “why us?” Looking back I feel that to be very selfish but I just couldn’t get that feeling out of my head at the time. I want to go back to the word I used earlier, “label.” I feel like that is what can happen a lot of times with these things and when I think about what I know now, these kids should be labeled as “miracles.” As you will see throughout this story, James had the real challenges to get to this point but up until now I thought the trials and tribulations were all ours. When in fact, he is the hero of this story and the strongest person I have ever met in my entire life. More on that to come!
I’m not sure we could have prepared ourselves for how difficult of a pregnancy this would be mentally. It tested us as a couple over and over again as things came up and we had to discuss lots of difficult options along the way. But we made it through and stuck together. The next memory that sticks out to me was when we were driving back from one of our myriad of doctor’s appointments and Lucy looked at me and said “I want to name him James!” I remember exactly where I was and what I was doing when she said told me that. I was on 9th Ave in Pensacola, sitting at a stop light, and I just broke down and cried. And right now as my mind takes me back to that place and time, I can hardly see the screen through the tears. It’s like that moment was when he went from being a “baby” to being a real part of our life and becoming James! It was like he was now with us, so when I thought about all these “what-ifs” it just got a lot more real and even more painful.
In order to give James the best chance after birth, we picked up and moved our family to Nashville, TN so we could deliver at Vanderbilt University Hospital. So many people made it possible for us to do this and I am incredibly thankful to all of them. The biggest thank you goes out to my military command who have allowed me to spend this time with my family without question. I have always been honored to serve in our nation’s military but nothing has made me more proud than how they have taken care of me through this time.
James came to us on October 21st through what I would call (Lucy would completely disagree) a quick and fairly normal natural delivery. There was a lot more staff on hand for James’ delivery than there typically are due to his conditions but fortunately for us, they weren’t needed right away. James had a true knot in his umbilical cord when he was born and as the doctor looked at me and said “he was lucky” I just remember thinking, “Doc, you don’t know the half of it.” Lucy was so happy that she was able to hold James and really be mentally present at this birth of our second son as that wasn’t the case with our first, Will, due to a bad experience with an epidural. We were able to hold James for about 45 minutes before he was transported to the NICU for observation. He weighed just under 7lbs and looked to be a happy and healthy baby.
James did very well in the NICU and surprising to us after a week we were able to take him home. He didn’t need any medications, surgeries, or anything while he was in the hospital and he really was just like any other newborn baby then. We had to take him for regular appointments with the pediatrician for his growth and well-being and the cardiologist for his heart condition. At this point, everything seemed fine and we were hopeful that he would make it to the 4-6 month point without needing a heart surgery.
At the one-month mark, we went to his cardiology appointment and the doctor said “I’m not sure he’s going to make it to 4-6 months without some help.” At that point we knew he would likely need surgery but we had no idea what that process would be like at all. No one can ever prepare you to take your one month old, 8lb baby into the hospital and hand him over to a bunch of strangers to perform open-heart surgery on him. It just doesn’t hit you until you have to do it and when you do, it hits you like a TON of bricks. And it did. That was now, the new hardest day of my life. The thoughts and emotions that went through our heads are just indescribable. However, when I talk to the other parents who are in the Pediatric Cardio ICU with us right now, I can just look at them and know that they understand. We don’t even have to say anything to each other, we can just relate.
His surgery went well and we were able to see him shortly afterward. Nothing could prepare us for what James looked like after surgery either. All I remember is seeing little old James in this huge room, with all these huge machines, hooked up to all these cables and wires. And the feeling I had was just a felling of pure helplessness. With Will, I was almost always able to pick him up, cuddle him, burp him, change him, basically be able to be the one to provide for him and take care of his needs. Well, for the past month neither Lucy nor I have been able to do that for James and that is really hard on both of us. The day after James’ surgery I was at the hospital with him while my cousin was watching Will. I left in the evening to pick up Will and Lucy called me and told me that they had to take James for surgery again because there were some complications. Again, I will never forget where I was or what I was doing when she told me that. You want to talk about feeling so far from in control? Try getting that call and being 45 minutes away and instead of before when you were actually there to hand your son over and kiss him and hold him prior to surgery you hear it on the phone. So, this was now my new hardest day!
But, James made it through the second surgery too and he was making great progress. At this point, we were hopeful that the way he was progressing that we would be home, together as a family, for Christmas. He got his breathing tube out after about 4 more days, he started eating from a bottle a few days after that and we thought all was going as planned.
I decided to travel down to Pensacola for a few days to check in with the squadron and get some work done. I was able to fly and do a simulator while I was down there, take care of some paperwork, and best of all sit around the squadron and just BS with some of the other pilots. But, James had other plans. Lucy called me and said that he wasn’t eating well anymore and that they were concerned about how he was doing. So, I rushed home on Wednesay after my simulator to make sure I was there in the event that anything else needed to be done. And it’s a good thing I did because the next night we got a call saying that James had to be intubated again and they were going to do another procedure on him to see what was going on in his heart.
I could go on forever with the details of everything that has been done since then but I won’t. For the next week after I got home it has just been very slow and steady progress. The biggest thing that we have learned from the last month or so is to just take one day at a time and not try to look too far in the future. Each day that we get to spend with this little miracle baby is a good day! I have no idea what the future will bring with Baby James but I am so happy to be taking this journey with him. It seems like an eternity ago when I had that “why us” question in my head and to tell the truth I am a bit ashamed that I even asked that then. This little boy has touched my heart in a place that I didn’t know existed and he has completely changed me as a person and given me a different outlook on life. There have been so many chances for him to give up and quit and he has kept fighting through all of them. I am honored to be his dad and I can’t wait to see what he does for this world.
WHAT CAN WE DO
So many people have reached out to me or Lucy and asked what we need, how can we help, is there anything we can do for you, we are so sorry you guys are going through this, etc… We have asked for your thoughts and prayers and continue to do so on a regular basis. We can truly feel all of you lifting us up through this difficult time in our lives. However, if you feel like you need to send us something or do something for us directly please don’t feel like we need that. We would like to ask you not to spend that money on us, but instead make a donation to The Children’s Heart Foundation in James’ honor or any other charity that you would like to support. This time of year is all about giving back and I know there are so many children out there who can be helped by that donation. There is nothing I would rather see than an outpouring of support to this or any other charitable organization. And, in this holiday season of tithing, I would like to match as much of your donations as I possibly can to The Children’s Heart Foundation before December 31st.
Just comment here, on Facebook, send me and email or message and tell me what you donated. I look around this Pediatric Cardio ICU every day and see how many heart babies and children come through here and I am just shocked. There isn’t an empty room in the house so I know this foundation has a lot of work to do to help all of these kids and could use all of our support doing so.
My last blog post came just before I went to San Diego for my mastermind meeting and to speak at an event called Flip Hacking Live that Justin Williams and Andy McFarland put together. For perspective, this event was one month before James was due so Lucy wasn’t overly happy with me. I will say that Justin and Andy are two of the best guys I have ever met and I am truly honored to be able to call them my friends. They had approximately 250 people at this event and Justin, knowing what Lucy and I were going through at the time, chose The Children’s Heart Foundation to be the charity that they would support for the event. One of the days of the event, we had a short period where I got up on stage with Justin and told the first part of this story about James and what we were expecting. We showed a video and asked that if anyone wanted to donate to the charity they could. Justin also agreed that anyone who donated anything, even a dollar, would get a video recording of the whole 3-day event. I don’t think that even mattered to this group as I’m pretty sure every single person in that room donated something to the cause. How do I know that? Because on the last day of the event, Justin and Andy announced that over $35,000 was raised and would be pledged in James’ name (it went up over $10k after they presented the check on the second day!). How did we raise that much money in 15 minutes? How did that check get so big? The reason was that Andy and Justin MATCHED what everyone in the room donated! Among another thousand reasons, this is why I am truly honored to call them my friends, and my family, and would like to follow them on their journey of giving back this year.
I will say this was the hardest and easiest blog post I have ever written. I am so happy that I was able to spend the 2 hours I am usually sitting in bed thinking, praying, reflecting, etc… sharing James’ story with all of you.
PLEASE SHARE THIS WITH ANYONE AND EVERYONE YOU CAN. I know there are a lot of parents or soon to be parents out there going through something very similar to us. Reading this may give them hope, it may give them purpose, it may change their minds on how to handle their pregnancy, and how to treat each other through this difficult time. If I could give any advice to them it would be that once that little boy or girl is here with you, nothing else matters! I know it’s hard but these kids are so tough and can go through way more than we can.
I promise we will get back to real estate on the next one!