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.
Upon being discharged from the hospital, we were told we’d be getting a wealth of help at home: nursing visits, physical therapy, and speech therapy. Combined with the myriad doctor’s appointments that Nolan had, there was a ton going on and I’m amazed my wife kept up with it all. She’s amazing.
So basically the nursing visits were incredibly simple: they wanted to be sure we knew how to draw and administer his meds, how to record his weight and sats, how to do his feeds, etc. They only visited a few times because they figured out quickly that we had those things pretty much under control. Once I commented that the nurse must see some pretty non-compliant families. She said, “Oh you can’t imagine…” It was nice to feel like we were doing something correctly, and after a few visits she stopped coming back because she wasn’t needed. That was a bummer because we were hoping we’d get regular visits from a nurse that would help with his care…no dice.
Physical therapy was there to help him with his arms and legs and prepping for sitting up, crawling, and eventually walking. Nolan spent over a month laying still in a bed so he needed a lot of work. Unfortunately I never got a chance to meet the physical therapist because I was always at work, but she tired to work on his wrist and tried to work with him on tummy time once it was OK’d by the cardiology team. One big note: you won’t be able to lift your heart baby under his arms post-surgery for several weeks due to the chest closure. This is serious stuff, just scoop him up until you get the ok!
Finally we had a speech therapist come to help Nolan learn to eat by mouth. Before we left the hospital we were told that in-home speech therapists were very few and far between so we would have to stay on them to get a therapist out to our house, particularly in the county we live in. Luckily we got someone to come out rather quickly. Unfortunately, though, this speech therapist SUCKED. She was about as friendly as a potted plant and always seemed annoyed she was working with a baby. I remember one day she said she had to take his vitals and I said, “The nurse just left and took his vitals, we wrote them down and you can use those,” and she replied, “Oh good…I don’t do well taking kids’ vitals.” THEN WHY ARE YOU DOING THIS JOB?!!!! Ugh. She was often rude and short with my wife, and I don’t play that. And she spent an insane amount of time just doing these face-touching exercises with Nolan: rubbing his cheek over and over and over and over….and over and over. Eventually after forever she tried to actually put something in Nolan’s mouth…and due to his really bad reflux, he spit up all over her. HA HA. From then, though, she seemed really annoyed and distant…and we were getting nowhere. It was really frustrating.
This was our routine, though…I wished Nolan would just come home from the hospital and in a couple weeks be a normal baby. But this was a new normal: it was going to be a long, hard marathon. And like I mentioned many times already: it was up to us to be sure he got the best care possible.
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…
It was so nice to be able to visit Nolan and see some definite progress on his part. While he was using an NG tube for feeds instead of bottle feeding, he eventually began breathing completely on his own, and the number of meds he was on was less and less. Soon we could hold him with the only thing being attached were his monitors. It occurred to me that this was the first time since NICU back in December that I had seen him tube-free.
The CVICU staff continued to be awesome: they would hold him during the day, and oftentimes I’d come in to find his nurse sitting in the recliner just holding him and talking to him. It was pretty special: I can’t continue to say enough about how great that staff is. They even had a mobile brought up to his room so he can enjoy the sights and sounds, and they brought up a bouncy seat for him too. It was like our son was moving from critical life to more normal life.
Eventually we began to try to have discussions with the staff about his possible discharge. Namely we wanted to know if they would discharge us right from the CVICU. We were told, though, that kids typically go to Progressive Care and are discharged from that floor. While it was nice to have the going-home conversation, it was kinda sad to know we’ve one day leave the CVICU and be under someone else’s care for awhile. Definitely bittersweet.
In the meantime, though, I kept coming in to see him and I would hold him (unless he was asleep or cranky) and we would talk about all sorts of stuff. And I never stopped calling him my hero…
Yeah that was pretty much me over the course of some weeks. Christmas was over and I was basically in the same routine as always: work, home, hospital, home, repeat. And I was like out of my mind completely. Some days I was exhausted. Some days I was irritable. Some days I was none of the above, I just kinda stared off into space. I found myself getting super forgetful: like I’d step out of my office, go 20 feet down the hall, then completely forget what the heck I was just about to do. Parts of my work day were routine too: call CVICU, ask for Nolan’s nurse, get an update. It was my way of keeping connected so I didn’t feel so off the deep end. I really wished I could spend more time with Nolan…but I had to work, there was no doubt about that.
Meanwhile, the heart team decided a different tactic with Nolan’s chest: as the swelling went down, they would basically push both sides of his chest together little by little every few days and then put this bandage over it to hold it in place. Inch by inch it went and his numbers kept holding steady, so that was awesome. All the while, Nolan kept improving enough to lose one med here and another med there, so that instead of like 20 pumps he was down to 10 or something. Hooray for improvement. Each night was the same, though. I’d go in and check in with his nurse, then wash my hands, then pull up close to Nolan and talk quietly to him. I’d pray for him, and most importantly I would always tell him he was my hero. I couldn’t imagine if it was me in that bed: I know for a fact I wouldn’t be strong enough. Some nights I would read or surf the web on my tablet; some nights we would jam out to Needtobreathe. Whatever I did, though, I always did it close to Nolan.
I tried to maintain a festive atmosphere in Nolan’s room, if all else for my own joy. We put up signs and pictures of his brothers, and I even went on the interwebs to look up how to make paper snowflakes, and I spent a couple nights doing that. The first one, I gotta tell you, came out kinda ghetto looking. And I mean GHETTO. It was squat and weird, but once I got the hang of it, those snowflakes looked dope. Nolan’s nurse (can’t remember which one at the time) tried to laugh at my ghetto snowflake…I called it unique. I even wrote out Deuteronomy 31:6 on a card and attached it to the side of his bed. I’d like to think that it was to encourage him to be strong and courageous, but you KNOW it was really more for me. I constantly needed that reminder.
I believe we were at home, preparing to head down to the hospital, when we got a call. We always knew when the hospital was calling because it shows up as something crazy like 1-9380993908230983098 on our phones. Anyways, it was Nolan’s nurse, who told us that Dr. Maxey wanted to attempt to close Nolan’s chest and would need our authorization. We gave it and quickly hit the road for the hospital. The cool thing about Nolan’s room in the CVICU was that it could also serve as an operating room, so that for procedures like this, he doesn’t have to be moved and unhooked from anything. We checked in at the nurses station, then waited in the waiting room. We were told it would take like 40 minutes or so, but I we were waiting well over an hour. Finally Dr. Maxey came out…when I saw him, I was hopeful. He sat down across from us and said that he attempted the chest closure, but that it didn’t agree with Nolan and he had problems with his pressures, so they had to open the chest back up. Talk about deflating. He said he would wait about 10 days or so, to let him get more fluid off. We went back to see Nolan and the room was busy with nurses. One thing of note was that Nolan had a bunch of ice bags around him…because he actually coded for a brief moment during the closure. But apparently God didn’t want him yet and everything turned out to be all good: his brain function was fine and his heart function was good too. We just had to continue to wait.
This day kinda shook me because of how real this situation continued to be. Nolan was so fragile in his condition and it could change any minute. I continued to try to hope that things were improving, but honestly everything looked like it just stayed the same. The nurses re-assured me that things were ok and that this wasn’t totally unusual, so I tried to keep that in mind as I continued to shuttle back and forth between home and the hospital. Sometimes it was hard to come home to a completely healthy twin after leaving a twin hooked up to so many machines for his survival. It didn’t seem fair. Other times, I was thankful for a healthy Grant and a healthy Hudson, who took my focus off the bad and put it on the good.
Being a heart dad is definitely a marathon, not a sprint. And unlike a real marathon, I don’t really think there’s any way to prepare for it, not completely. I mean you can read up about it and talk to other heard dads (and I hope you do!); but there’s no anticipating the emotion that comes with it until you’re in deep. And fortunately, that’s where having connections helps…you’ll need people to fall back on.
I definitely can’t write about Nolan’s journey without taking the time to speak about the staff at the Cardiovascular Intensive Care Unit. Everyone, and I mean, everyone there treated us like royalty. They were polite and thoughtful, they took time to answer our questions, and always asked if we needed anything. Shoot, CVICU even had free snacks and whatnot! Cartons of chocolate milk became my daily habit…yum. The nurses we had were amazing, every single one. We would talk about what the near future would look like for Nolan, we’d talk about what brought them to Charlotte (if they weren’t originally from here), we’d talk about music, tv, and movies. Sometimes things got funny: like when they’d ask me where I worked. When I’d answer hospice, they’d all act the same way: “Oh my gosh, I don’t know how you do it!” and I’d be like, “Really? Really. You got kids here with chests open and on fifty billion machines and you ask how I do it?!” Or even better, there was one night I was with Nolan and I was just WIPED OUT…so I sat in a chair in the room with my head on the window sill and I was out cold. So the nurse turned down the lights and stepped right outside the room to the nurse’s station. I awoke a little while later to overhear a couple of the nurses talking about their dating lives, and it made me laugh. They’re both human and superhuman at once.
I do want to talk in particular, though, about one nurse: Stirling. She was Nolan’s first nurse after his surgery and she did a lot to make us feel at home at the CVICU. The first thing you notice about her is that she works really hard, yet is always really happy and positive. And she loved the mess outta Nolan, you could tell. One day we were talking with her about how Hudson wouldn’t be able to meet Nolan for a long while due to the flu ban. So what did Stirling do? She made Hudson a little card and signed it “From Nolan.” It blew my mind. I mean, Stirling was busy keeping Nolan alive, and if that’s all she wanted to do, that would be a-ok with me. But she went way above and beyond that. It was so kind and thoughtful. And she kept on doing things like that: getting him socks or a little hat to keep him warm, or finding fun blankets to put in his bed. Even when Stirling had to rotate on to another patient, she always made time to come visit Nolan. We were blessed to have her as Nolan’s first nurse: she’s the prime example of what makes the CVICU at Levine Children’s Hospital so great: we really felt like VIPs there, even though we didn’t necessarily want to be there, if you know what I mean.
On December 16th, at 6 days old, Nolan was finally broken out of NICU for good. He was on his way up to the Cardiovascular Intensive Care Unit (CVICU) for some observation and so the team can get ready for him post-surgery. As we inched ever closer to surgery day, things felt incredibly tense, and I was just trying to keep my faith up and be strong. We got to CVICU about mid-day and it was an opportunity to see Nolan without that stupid bili light mask on, though they said he’d need to continue to light treatment as soon as they settled him in, which sucked. A nurse was getting him situated in this huge room and eventually a Nurse Practitioner named Lindsay came in. She noticed I was wearing a shirt from church and noted she went to the same church but a different campus. That was cool and helped cool things down a bit. Meanwhile, Nolan was just being SUPER fussy. My wife and I felt like he was just miserable with the mask on and wanted to be held. Finally Lindsay just picked Nolan up in her arms and gently rocked him back and forth. It’s funny: I can close my eyes and picture this part so vividly and I don’t know why. Maybe because it was so unexpected? I don’t know. I just think it was awesome to see this complete stranger show complete human care for our son. And you know what? He calmed down. So Lindsay said no more bili light…he’d had enough and was fine enough to be with his parents for the day. And she was instantly my hero.
They got Nolan all snuggled up in bed to rest for a bit, then brought in a couple chairs to sit in when we decided to hold him.
And that was it…we waited. At 6am the following morning they would come for our one-week old and whisk him away to some of the most serious surgery possible.
In the meantime, though, I definitely wanted to take advantage of my time with him, so Bekah and I took turns holding him…all night.
This is one of my favorite pictures of me and Nolan. I love looking back on it and I’m amazed at how tiny he was. And even better, he chose just that moment to open his eyes and look up at me. A great moment, indeed…
What a day. This was the same day that I got to spend doing fun train stuff with Hudson. It was also the same day Grant came home. In addition to that awesome stuff, though, it was a day something wack happened. See, up until this point, we became pretty food mainstays at NICU. The nurses and staff knew us and we were there a ton. In fact, we were part of the process: when the time came, the nurses would let us help by taking the twins’ temps and changing their diapers. Easy, but it was a great way to stay involved and have hands-on time with the boys. And even if one of the boys were to poop when it was not scheduled diaper time, they would tell us it was ok to change it whenever we wanted. Today, though, this was different.
On the way back from my day with Hudson, my wife called to say Grant would be discharged, but she was also very emotional as she told me about this really rude nurse who wouldn’t let her do anything with Nolan. At one point my wife heard him poop and when she went to change him, the nurse yelled at her and said he wasn’t scheduled to be changed yet and it didn’t matter if he pooped or not. Well as I soon as I heard that, I was PISSED. Like that bear up there (you’ll see him again later). One thing I DO know, is that working for the same healthcare provider as the hospital meant that patient complaints are taken very seriously. And if you remember from a previous post, the NICU staff provided me with a handy-dandy list of important phone numbers…one of which was the Nurse Manager. So I called that number and calmly explained the situation. Adding with rather sharp emphasis that, “I do not appreciate anyone allowing my son to sit in his own waste for any length of time.” The nurse manager apologized profusely and said she’d handle the situation and would like to meet with me the next time I was in. I told her I was on the way.
When I got to the hospital, she was there to meet me outside of the NICU doors after I did my 2-minute hand-wash and gowning. I told her before we talked I just wanted to go in and say hi to my wife and twins. I went in and noticed Nolan’s numbers on his monitor were a little low. So I leaned down and said “Hey buddy, I’m here and i love you. I’ll be back, ok?” and his numbers went up. Told you…we have a bond. I did the same for Grant then went off to meet with the Nurse Manager in her office. She was very cordial and again apologized for any problems. She said she spoke with my wife and the nurse and that the main issue centered around Nolan having some lower oxygen saturations that day, and they didn’t want him too worked up through too much human contact. She also said the nurse in particular had many, MANY years of experience and only wants the best. In the best way I possibly could, I told her I didn’t care if the hospital was built around that nurse, she needs to treat people better…like human beings, with good, clear communication. If she just SAID something, it wouldn’t be such an issue…instead she had to be all stank about it, which caused this hullaballoo in the first place. And I told the nurse manager, “I appreciate your expertise, and I will keep contact with him to a minimum…but if I want to hold his hand or his foot, I’m gonna hold his hand. And you will not stop me. That’s MY son.” To be honest, I didn’t feel completely satisfied with the meeting, but it was more important to me to voice my concerns and be on with my life; particularly spending time with the twins and getting Grant ready to come home.
Unfortunately, people talk. That evening, after Grant was settled in at home, I went back to the NICU for a few hours to hang out with Nolan. I sat real close to him, held his hand for a little while, but mostly just sat quietly, prayed, or talked to him. When I got there, I asked to see his nurse for an update. At this time of day, the shifts had changed, so it was a new nurse, thank GOD. She came up and I asked how he was doing, and after her report I asked if it was ok for me to just scoot up close to him and talk to him quietly. Her response blew my mind. She said something like, “Oh yeah, I heard about that. You know, like, you’re the parent, if you want to do something, you can go ahead and do it, I won’t stop you.” That was frustrating. So apparently word got out and suddenly I was the Ogre Parent. Great. I tried to assure her that it was merely a simple question and I just wanted to do what was best for him, but I got the same kind of response. Ok, whatever.
Listen, sure i was labeled as a bad guy by a small handful of people…but it was worth it. I put those bustas on notice that I didn’t want them treating my family like just another number. We got incredible care at the NICU, so don’t think a few knuckleheads ruined it for us. But it became clear to me that things aren’t always communicated well, nor do they happen in a manner you like or feel is fair. SAY SOMETHING! It is your right. As a parent, you are your child’s best advocate. Trust your gut and let someone know how you feel. Sure, there’s the chance you become the bad guy, but most of the time they just want to work hard to make it right…and they should. Please, for the sake of your kids, SPEAK UP!