Lately the weather here in North Carolina has been – for lack of a better word – possessed. One weekend it’s snowing and the van is encased in ice, and then a few days later it’s 70 degrees. Go figure. I’m not complaining, though, I appreciate some really mild weather this time of year; after all, I grew up in Connecticut, where the snow can get waist-deep, so this is much appreciated. Anyways, we were recently taking advantage of a fairly nice evening outside with our fire pit. It was a little cool outside, so we had some light jackets on and made some hot cocoa and just hung out before putting the kids to bed. Grant loves the fire pit, referring to it as the “fire camp,” so he was excited to hear we were starting the fire. Of course, our kids’ attention span lasted a whole 42.7 seconds and they were off playing with toys in the back yard, which is just fine. At one point, Nolan was playing with a metal Tonka dump truck and was piling all sorts of stuff into the back: a football, a small skateboard, a bowling pin, a bucket. And it was cute seeing him lost in the world of play. My wife commented how “it’s nice to see him just doing little boy stuff.” And it’s true: you’ve been there too – where you look at your Heart Kid doing even the most “normal” things and you just appreciate it, because they’ve been through so very much.
As a dad, I live for all the moments and all the memories with my kids. Walking, first words, first days of school, piling on top of their poor old man:
School performances, Donuts with Dads, parent teacher conferences, etc. I live for it and I will do everything possible not to miss those moments. I’m so thankful for that chance.
Lately I’ve been really thinking about those types of moments and how fortunate I am to experience them. My job is really flexible in letting me attend school stuff or appointments and it means a lot to me and the kids, too. Even time at the park is a joy:
But as a Heart Dad I really want to acknowledge that there’s a tremendous amount of sacrifice that goes into the opportunity to make those moments happen.
Every single day – rain or shine, snow or sleet – there are a group of people who leave their homes while it’s still dark, or leave home while most people are just getting home from work, and they park their cars, ride an elevator, badge in on a time clock, wash their hands, and get to work. Some of them walk into the room where I’ve sat, sleepless and helpless with my son on a vent, and say, “Hi, I’ll be your son’s nurse today.” Some of them load up a cart of cleaning supplies and work hard to keep things clean and avoid the spread of germs. Some lug a ladder down the hall to replace a burned-out light bulb so a nurse can see better when he or she is charting. Some fire up the grill in the cafeteria to sling burgers and chicken sandwiches for hungry families and staff. Some scrub in for a grueling surgery in an effort to safe a kid’s life. Some land a helicopter on the roof, carrying a life that needs desperate help from the best team available. These are the hospital workers…and they sacrifice so much for us.
I really want to use this post to acknowledge all the hospital workers – clinicians and non-clinicians – who give so much so that we can enjoy so much. You have lives, you have families, and you have memories you want to make, too. I just want you all to know that it’s not lost on me that sometimes you sacrifice a school performance, a bedtime story, a goodnight kiss, a good push on the swings…all for my son, and to give us the chance to enjoy him. I know you put up with a lot: the demands, the long hours, the demands, the hours without peeing, the hours without eating, the sad stories. I see you, and I thank you. It’s your job, but I know your job comes with a steep price: you could do anything else in this world but you choose what you do, and I could never enjoy the memories I have without you.
So hospital workers – wherever you are, whatever you do – just know that you are loved, you are appreciated, and your sacrifices truly do pave the way for magical moments in a Heart Family’s life. Your work is not in vain, your work is priceless.
I’m sure before you had a child that was born with a critical illness, you knew of your local Children’s Hospital, but you didn’t really know about it. You’ve probably said to yourself, “I’m glad we have it, I just hope we never have to use it.” For you that wish didn’t come true and ushered in a reality that you never expected.
Like all of us, you’ve made many trips to and from these hospitals and walked through the same set of doors over and over: rain or shine, sleet or snow, holiday or humdrum Wednesday. As we left our – hopefully – last surgery with Nolan, I started to really think on the significance of the front door of the hospital.
The Door can lead to our greatest fears, but also our greatest hope. There have been way too many times where I’ve had to walk from the parking garage to these doors, and every step closer makes me more scared and more nervous. Because on the other side of The Door is something scary for my son, something unknown, something painful, but something necessary. But also on the other side of those doors is a team of people who have the professional training to give your kid a shot at a full life. This door also leads the way back home…it says “we made it.” The Door leads to thanksgiving…to joy…to peace.
The Door also leads to suffering. And before you think I’m getting too heavy, just let me say that I believe we don’t talk about suffering enough when it comes to healthcare. Because it makes us uncomfortable and carries a negative connotation. But like it or not, this is the reality of what occurs every single day at a hospital: innocent kids given a diagnosis they don’t deserve, losing time on a childhood that should be free of pain and fear. There are parents who walk through those doors everyday consumed with thoughts like: is he going to make it? How am I going to pay for this? How long? How much more can I do? What about work? And on and on and on. They suffer, too.
Healthcare workers: you have such a power within your hands to impact suffering. Sure, if my son hurts you give him something for it. If I’m cold, you give me a blanket. That’s what’s considered inherent suffering. It’s tied to the thing we’re here for. But what else? There’s another type of suffering called avoidable suffering and preventing/reducing this takes a lot of effort and isn’t something you learned in school. What does this look like? It’s the worker(s) that walk past the lost parents in the hallway, because “I’m too busy right now.” It’s the worker that doesn’t make eye contact. It’s the one who talks down to people. It’s the one who won’t realize that the hospital isn’t quite home for a sick kid, and won’t go beyond the scope of their job description to make that better. It’s the worker who operates off of a checklist instead of a heartbeat. It’s the one who sees a parent as “pushy” or “snappy” without realizing that we…are…suffering. Once you realize that and try to put yourself in our shoes, it will drastically change the way healthcare is delivered. Because human connection and empathy are a powerful way to help heal. I know you didn’t get into healthcare for checklists, productivity reports, and to spend half the day scouring the building for the last working med pump. When you empathize and see suffering for what it is, you will reconnect with the reason you got into this business.
What about those who walk back out the doors and re-enter their lives? To friends and family: you play a crucial part in alleviating suffering, too! Please realize that while the surgery was a success, and the prognosis is good, we’re going back into a world that’s forever changed. There might be medications to give, multiple appointments, tube feeds, endless stops at the pharmacy, loss of work, increase in stress, and a new schedule that basically says we can’t hang out like we used to. We want nothing more than to go back to that, but this is our new reality. And it’s really, really hard sometimes. And we need you. Don’t stop inviting us to stuff: one day we’ll surprise you and say yes. Don’t stop asking how you can help, even if you don’t know what you’re doing. Realize that while we might wear a smile, it’s not always that way in our minds. We’re always going to worry about the future, that’s just how it is. So text your friend, send a card, cook them a meal…just let them know they’re loved. And try to understand what it would be like for you if the rug was suddenly pulled out from under you and you’re left to put it back together. And I also can’t let this paragraph end without saying that unfortunately there are people who walk through The Door empty-handed forever. I cannot imagine the pain these families face. Please be there with love and patience and kindness. If it was you, you’d want the same.
The Door is a place of great heaviness, but there are things we can all do for those who are currently standing at The Door. If we realize they have fears and are suffering, we can surely do things – through compassion and empathy – to give them the power of hope and joy. They can walk into the hospital knowing they’ll be treated like family. And they’ll walk out knowing they are truly loved.
So this was new territory for us…the Rehab unit. While Nolan’s weakness was unexpected for us, we are always willing to do whatever it took to make him better. So to the 4th floor we went. We met with Dr. Tsai, who was over that unit and he was a very kind, compassionate guy…we really liked him. For some weird reason we technically had to be discharged from the hospital and re-admitted to the Rehab floor, even though we never once left the hospital. But oh well.
One thing became clear right away: we were outside the friendly confines of our usual CVICU and Progressive Care units, where caring for kids with CHDs is right in their wheelhouse. Here? Not so much, but that’s not a bad thing. We just had to do a lot of explaining and re-explaining, and – of course – resetting the blasted pulse ox machine so it wasn’t beeping every 45 seconds. A slew of therapists came through to do initial evals on Nolan and we learned that everyday except Sunday he would have up to 3 hours of therapy a day and they would come in every afternoon to post the next day’s schedule on a calendar in our room, which was pretty cool. It would have the therapy, the therapist’s name, their picture, and length of time. They even scheduled nap/rest times. I actually liked knowing who was coming and when, as opposed to other floors when people just show up (you know how that is…come on, people). Otherwise the staff worked pretty well with us as they got used to Nolan and let us kinda control how often they’d come in and bug him and even let us give most of the meds if we were able. That really ensured a more restful night…for him, not for us: we slept on an awful, skin-eating vinyl couch, but whatever.
On Nolan’s second day they jumped right into things like helping him stand and use his arms for play:
It was a rough go at first: he was still very weak and still on oxygen so things were slow-moving and he got tired easily. But this is Nolan we’re talking about, so he’s a trooper! We enjoyed walks around the hospital in his wagon and even fun time in his room…one of his favorites was playing Bingo:
The combo of letters and numbers was right up his alley. We’d use the TV in the room to tune into the radio station in the lobby and he would call and say “BINGO!” whenever he’d make a line. Then two of the interns would come up dressed like Disney characters and bring him a prize. He LOVED it.
So on and on it went: Nolan continued to work really hard and began making some good progress. He even got some visits from the therapy dogs:
We got to meet some families there in that unit who had been there for some time and would be there for some time. Their kids were going through some real difficulties and my heart went out to them. We knew Nolan would regain his strength and for that I’m thankful. Nolan started getting more energy (and got pushier and bossier, as is his custom) and eventually we got to this point:
That is a post-Fontan, little beast, completely walking on his own with NO oxygen! YEAAAAAAAAAH BOY!
So the next step, then, was to get the heck outta this place and get back home! WOOHOO! And then finally…33 days after we went in for the Fontan…Super Nolan walked back through those hospital doors and we made our way back home, where we can focus on an amazing future for this little nugget:
February 2013 brought us great news: after 2 months in the hospital, Nolan would finally be coming home! I believe I was at work that day, so I quickly told my boss then headed down to the hospital with Bekah. There was still a lot to do: Nolan would need a final clearance from all the doctors, we’d have to pack up all his gifts and his scale and his feed pump and IV pole, etc. Someone from the hospital’s pharmacy came up and brought us all the medications they filled for Nolan. It was very busy and very exciting. Those of you who have gone through this know, however, that it’s never ever quick. There’s a lot of waiting…and waiting…and waiting.
Finally it was time: I went to get the van and the whole time I had a spring in my step and I couldn’t stop thanking God that Nolan would finally be coming home. Even though Nolan was small and not completely strong, I was far less nervous bringing him home, I was just so happy.
It wasn’t til I got home, though, that reality sank in: this is all up to us now…there’s no more nurses around, no doctors, none of that…just us, a scale, and a sat reader. Oh boy. We wanted to be sure we did everything right so that Nolan had the best chance of getting to his next surgery. And every day without problems is a step in the right direction.
It was the first time we had all three of our boys together…it took 2 long months, and we had been through so much. But the journey was just getting started. In the meantime, though, it was nice to have our twins together once again…that’s Grant on the left and Nolan on the right:
As I mentioned before, the flu ban at the hospital made it difficult on us because we couldn’t have any of the other kids with us. As February was underway the flu ban was finally lifted, which meant that Hudson would finally be able to meet his little brother. I know I was excited! We tried to play this up really big with our 2-year old, like he was going somewhere special to do something completely awesome. We had someone watching Grant so that both Bekah and I could go with Hudson.
So we loaded him into the car, and went on our way to Levine Children’s Hospital. We reminded Hudson, as always, to be a good listener and all that good stuff, and we continued to play up the fact he was finally getting to see Nolan. We got to the hospital and rode the elevator up. Hudson seemed pretty happy so far. We buzzed in to the Progressive Care floor and as we walked down the hallway, the nurses were very happy to see Hudson. We said that it was his first time meeting his brother and they were about as excited as we were. When the nurses talked to Hudson, however, he clammed up in spectacular 2-year-old fashion. I should’ve know what was coming…
We got to Nolan’s room and we wanted Hudson to at least get up and say hi to him. He wanted no part of it…Hudson decided he was going to be completely HORRID. And he was. He was all over the place, he was defiant, he didn’t listen. And I was pissed. I tried to put on a movie for him to watch and that appeased him for like 10 minutes. Unfortunately our visit had to be cut really short because of Hudson’s behavior and I was really disappointed. I did, however, attribute it to Hudson being tired from his already long day. I did, after lots of threats (lol), manage to get Hudson to snap a photo with his brother…ah the joys of parenting.
It was starting to look more and more like Nolan was getting ready to be sent home. This long portion of our journey would soon be over! But hold up, not yet. We had to complete…THE CHECKLIST. We were presented with a discharge checklist of things that we needed to learn, perform, and complete prior to Nolan being allowed to go home. This included things like learning how to draw and administer his meds via the G-Tube, sitting him in his car seat attached to a sat reader for 30-45 minutes (the equivalent of a drive home), learning the CHAMP program, setting up his feeds via G-Tube, learning infant CPR, and spending one night at the hospital completing all his care. Some of the tasks were pretty easy: the CPR lesson came in a packet from the American Heart Association that had a little practice dummy and a DVD to watch, then a nurse reviewed it with us (the good thing is we got to keep this kit so we can share it with people who would dare to watch Nolan).
Some of it we completed separately due to our schedules. The one thing that got me nervous a little was drawing meds. I was really wanting to pay good attention so I didn’t mess things up. I checked, re-checked, and checked again before administering the meds. Nowadays I’m a beast at drawing meds. Once we got comfortable doing everything else, including feeds, it was time to schedule a day to stay over at the hospital. I arranged everything with work, but honestly we weren’t looking forward to it as much. Not because Nolan was on continuous feeds and we’d need to prep his formula, or that we’d have to remember when to give his meds. It’s because his room at Progressive Care was TINY. It had one little couch along the wall that was no more than about 6 feet long. There were 2 of us. I’m over 6 feet tall by myself. So I let my wife sleep on the couch and I had the pleasure of sleeping in a rocking chair…yeah, that sucked. Big time. But aside from some chiropractic issues, the night went well and it was good to see everything on THE CHECKLIST signed off. The next step was to wait for doctors’ approval to send Nolan home…oh the suspense.
One of the cool features of Nolan’s Progressive Care stay was the TV in the room. Sure, it had your standard remote/call button combo, but you could also plug it in to a keyboard and access movies, music, and websites. That was pretty dope, so I worked it into my visits with Nolan. I’d go to see him, turn on Pandora on the TV, and turn on the station for my church’s worship band: Elevation Worship. Then Nolan and I would sit in a rocking chair and just rock and listen to some worship music for hours. It would become the best part of my day by far. Most of the time Nolan would sleep, but sometimes he’d just look at me for long periods of time.
One day, though, things were different. It’s funny because there wasn’t anything inherently different about that day: I wasn’t having a bad day, I wasn’t bummed out about anything…it was just a regular day in the neighborhood. I had Nolan in my arms and we were rocking away in the chair. At one point I just looked at him: marveling at his big eyes and his cute little nose. And I whispered to him, “I love you so much, I would do anything for you.” Then BAM. He did it again, God decided to show up. Not physically show up, but more like make a PSA in my heart. You’ll remember from https://hlhsdad.wordpress.com/2013/11/03/dear-god-its-3am-im-scared-and-i-dont-like-you-right-now/ that God did the same thing when I was struggling before Nolan’s surgery.
Just like last time, the word was very still and quiet: “Now you see how much I love all of you, and you are all born broken.” WOW. And then – this is gonna sound weird – it’s like God gave me some kind of deep understanding of His love. You know, we all know John 3:16…we memorize it, we see it on signs at football games, people put it on business cards. But do we really know what it means for God to love with an overwhelming, totally-forgiving love? Like do we REALLY know what that means? I loved my son so much, I just wanted to pour out every bit of me to make him feel loved and whole, even though nothing I could do could make him whole. But in that instant God used that example to show me what His love was really like. All I can describe it as was heavy. Really, really heavy, like the vastness and greatness of His love was bearing down on my shoulders to where I couldn’t stand the presser and was overwhelmed. And that was just a glimpse.
And just like that, I was back in the rocking chair in Nolan’s room with him in my arms asleep. And on Pandora, the song “How He Loves” by John Mark McMillan came on. Almost as if right on cue. I was completely speechless. And overwhelmingly moved. I listened to the words of the song and played that whole experience over and over in my mind. Oh how we take God’s love for granted, especially since we’re all messed up: not always physically. I think no matter what we’re going through, we need to stop and really think about God’s love. About how much He loves us in spite of the abuse and rebelliousness we hurl at Him. His love is so strong and only He has the shoulders to bear it all. Thank you God for your love. Thank you for showing me your love in a hospital room. Thank you for showing me there’s so much more than what’s in front of me.
Once we began to acclimate to Progressive Care, thanks to Volunteer help, it became like a new routine. Then things got stupid in a hurry. When Nolan was born, his left hand/wrist was a bit limp. We weren’t sure why, no one really was. It was checked on multiple times while he was in CVICU, but nothing was broken or amiss, they guessed it was just weak. So one day someone from the hospital brought him a brace for his wrist that would go on for a couple hours, then off for a couple hours. Simple, right? Wrong. This is where Progressive Care turned into the Three Stooges. Nurses would come in to put on his brace and say “Now which hand does this go on?” As if it wasn’t OBVIOUS which hand was just flopping around. OR, to make it worse, some of them would put it ON THE WRONG HAND! Nolan was also on continuous feeds, and it never failed that a CNA would come in and ask “When was the last time he ate?” and it got to where I’d say things like “He’s on continuous feeds…see that pump in the bed with him? The big one there? That one.”
It was frustrating, and I didn’t want to be rude. But I know from working in the medical field that each patient, Nolan included, has a freaking CHART. And if you read the chart you can find out lots of awesome things like the fact that he’s on continuous feeds or that his brace goes on his left hand. WOW! Imagine that! It was like I was working with amateurs, though. So I decided to take matters into my own hands and call the nurse manager for Progressive Care. If you remember back in https://hlhsdad.wordpress.com/2013/11/01/you-have-a-say-in-your-childs-care/ I spoke with a nurse manager at NICU about Nolan’s care and the result wasn’t the best. I definitely didn’t want a repeat of that, so I decided to choose my words wisely. I told the Nurse Manager about the things that had been happening and how, to be honest, I wasn’t the most confident in the care he’s been receiving on that floor, but that I didn’t want anyone to be in trouble, I just wanted to be able to work together to ensure Nolan got the best care possible. She was very nice and showed legitimate concern about the issues I raised.
She called me back later in the day and said that, while remedial, her quick solution was to have Child Life print up a little poster called “ALL ABOUT NOLAN”, and I could write on there his likes, dislikes, which hand his brace goes on, yadda yadda. I know, it seems silly to have to do that, but it was a step in the right direction for the team. And would you know? It seemed like it worked! Things started getting less silly there and the frustration level went down. The Nurse Manager even made it a point to check in from time to time to see how things were going. It was so much different from the last time I spoke with a Nurse Manager, this was a positive experience. But positive or not, remember this: you DO have a say in your child’s care. If you don’t like how it’s going, say something!
As January 2012 gave way to February, I knew exactly what I wanted for my birthday: for Nolan to be home from the Hospital. Fortunately, we had some progress in this regard. One day my wife texted me that Nolan was going to be moved from CVICU up to Progressive Care. Like I mentioned in my last post, this was absolutely bittersweet. I mean, while no one wants to be in an ICU for any reason, we felt pretty spoiled by the CVICU staff: they took awesome care of Nolan AND us. Every night I was there, I was asked by a staff member if I would need a sleep room. I wouldn’t, because I had to be home with the other kids, but the gesture was nice nonetheless. On the other hand, going up to Progressive Care was a clear sign that he was getting closer and closer to coming home!
A little later on in the day, my wife texted me Nolan’s new room number. I had a break in the day so I called her to ask how everything was going. Her reply: “I don’t really like this floor as much.” When I asked why, she said that the nurses had more patients than the 1-on-1 care we got at CVICU and that it was lengthy periods of time between someone coming in to check on Nolan.
I hoped that things would improve and this was just a temporary bump. I HOPED. But when I got home, Bekah confirmed what she mentioned earlier. So I scarfed down dinner and headed down to the Hospital. I got up the Progressive Care floor, having never been there before, and was pretty amazed. There were a TON of rooms…and it was super-loud. Lots of noise in the hallway and people talking in nurses stations and whatnot. Definitely not the peace and quiet I was used to in CVICU. Regardless, I went to Nolan’s room and found him asleep…and alone. That was pretty depressing. I looked around for a nurse but couldn’t find one. So I went to the nurse’s station and waited and waited until someone decided to notice I was there. I asked for my son’s nurse and was told she’d be in to the room momentarily. I waited…and waited. Finally the nurse came and I asked her the same set of questions I’d ask the CVICU nurses: how was his day and what is his weight? The nurse gave a non-specific “He’s having a good day” and then said “Let me go look up his weight, I’ll be right back.” Yeah, she didn’t come right back. About an hour later she returned with a scale to weigh him. Ugh. Was this was Progressive Care was like? You gotta be kidding me! His room was much smaller than his previous one, so all his bouncy seats and whatnot took up a ton of space, to where you almost couldn’t move around.
After the weigh-in, I didn’t see the nurse again for the rest of my visit until I was ready to leave. I went to the nurses station to get the phone number for that floor, so I can call routinely during work hours and get updates on Nolan. To make it worse, I had to go home and leave Nolan there. On my way out I saw his nurse…I practically begged her to check on him routinely since he was going to be alone. She assured me she would. I hope she did.
On the way home, I was really bummed out. I couldn’t get the thought of my almost 2-month old laying in that bed all day with very little interaction in terms of nursing visits. He went from being rocked by CVICU nurses to being practically ignored. That night, I couldn’t sleep. I was consumed with trying to figure out how to get Nolan some more love and affection when I or Bekah couldn’t be there. I didn’t have a ton of PTO time for work, so I couldn’t take time off…maybe they’d let me work from the hospital? No, that wouldn’t work. It was so frustrating.
I went to work the next day and called Progressive Care about 4 times to check on Nolan. I’m sure they got annoyed but I didn’t care. That’s my son. You know what they say about the grass being greener…well so far, the grass definitely wasn’t greener…
Now that Nolan had a successful chest closure, all we had to do was continue to get him off the meds and then get that breathing tube out. On one hand, it felt like the hard part was over, but in reality there was still a lot left to do. Nolan was doing well, though: he’d open his eyes and look around a little bit and some of the meds were going away. We all kept doing our routine of juggling kids and work to go spend time with Nolan. It was exhausting but necessary: I wasn’t gonna miss a single day with Nolan. Suddenly, though, a weird thing happened to me. I started to lose my grip.
I don’t know why, and it wasn’t tied to one particular event or circumstance. It’s just like I woke up one day and felt like I was completely unraveling. I would fell really bummed out, and even though Nolan was showing slow progress, it didn’t feel so great to me. I felt completely disinterested in just about everything, kind of like I was walking in quicksand or some crazy fog. The Children’s Hospital is attached to the main hospital here, so you have to pass by the main hospital to get to the entrance to Levine Children’s. And day after day I’d see happy parents trying to figure out their car seats so they can bring their newborn babies home. And I wasn’t happy for them, I was jealous. I just wanted Nolan to be home already so we can be home. The worst part was usually I would go and sit with Nolan and always pray for him. This time I found myself sitting next to his little bed and asking God just to help me get through it all. I felt like somehow it was my fault things were progressing so slow, and it was my fault that I couldn’t spend as much time with Nolan or with my other two boys. Then I’d go to work and feel like I couldn’t do anything right. Ugh, what a mess I was.
One day at work I decided to chat with one of our chaplains, whichever one happened to be at the office at the time. This time it was Carl. I explained things to him and he listened and just kind of nodded and said “You know, maybe you should try taking some time and write down something every day that you’re thankful for. That could help put things into perspective.” That’s all. No fiery scripture-quoting, no organ, no laying on of hands. So I did just that: I went to my office and grabbed a scrap of paper and began to write down a few things I was thankful for: my wife, my family, my home, working cars, a good hospital, food, running water, the ability to get out of bed in the morning, the ability to breathe on my own….
And just like that I felt WAY better. Ok so it wasn’t so bad after all, I was just being super-hard on myself due to all the stress we were under. That night, the visit – and future visits – with Nolan went much better. The drive to the hospital didn’t bother me, the parents loading up fresh newborns didn’t bother me, and I kept praying for Nolan and calling him my hero.
The HLHS journey is a very long one with lots of good moments and lots of bumps too. You can’t ever compare an HLHS baby and a healthy baby side-by-side, you always have to put things in perspective. Just remember: if your little one is doing well, and you’re doing well, then all is good. Everything else is a bonus.