So before you say anything, I realize I am WAY late on this post. Better late than never, right? It occurred to me that I never posted any kind of recap on what I was up to for CHD Awareness Week, which – if you remember – was waaaay back in February. So here’s some background:
I wanted to do something that raised CHD Awareness but also gave back to the community. Sometimes that’s a really difficult thing to do. A couple years ago I did 32 acts of kindness for my 32nd birthday and it was amazing, but it also talk almost all of 4 days to complete and I needed something that could be accomplished in one day but was still impactful. The problem was, I couldn’t think of a single thing. I loved the idea of acts of kindness but how to freshen it up for 2016? Then the answer came…a heart. But not just any ol’ heart: a heart that gave back and raised awareness. You see, the plan for this year was to do 10 acts of kindness in my area in 10 specific locations…and when it was all said and done and all those locations were mapped out, it would look like this:
At each location I would leave behind information about Congenital Heart Defects. So after coming up with a plan and coming up with all my stops, it was time to kick it off on the morning of February 10th, which was right in the middle of CHD Awareness Week.
Stop #1: Nolan’s preschool
The first stop was to Nolan’s school: we wanted to bring some heart balloons and treats to his teachers to show them how much they really mean to us.
There are not a lot of preschools lining up to take a kid with a heart defect AND a feeding tube. But they graciously took Nolan once they saw he so desperately wanted to be with his twin brother in school. And it’s been so great for him: he has learned a lot and his teacher is the BEST. The visit went nicely and I think Nolan enjoyed giving out the balloons and CHD awareness info. And then we were off to the next stop!
Stop #2: Mint Hill Public Library
This stop was a lot of fun because we made some really cool sun catchers out of red and blue beads (CHD Awareness colors) to bring to the library so they can be displayed in their front window.
We also donated a few books, including “My Brother Needs an Operation,” which is a CHD book that was donated by the super awesome Baby Hearts Press (please visit them here, and buy like 10 books!). Nolan loves books and was excited to bring some to their staff. Wanna know something wild? So while I was planning this particular stop, I was emailing the manager of the branch, who was very helpful but wasn’t there yet when we arrived. When I followed up with an email thanking him, he told me he also had heart surgeries in his youth, “with the scar to prove it.” How awesome is that? It’s amazing the connections you find out there!
Stop #3: Robinson Presbyterian Church
So we were doing well on time (I was trying to keep on a schedule) and everything was going quite smoothly. This stop, though, was one I was really unfamiliar with and ended up being one of the most touching. You see, when I came up with this plan of a heart-shaped map, I drew the heart first around the city then worked on figuring out what fell along that route. Sometimes that was easy, sometimes it wasn’t. In this case, my Google maps search found this church in Charlotte. I’ve never been there and to be honest I can’t recall ever even passing by it before. But I found out that they had a ministry called Room at the Inn, where during the colder months they bring the homeless in and give them a warm meal and a warm place to sleep before loading them up with more food and some toiletries. I offered to collect some toiletries for their program, which they were happy about. I collected these by hosting a pizza party at our house and having attendees bring some toiletries to be donated. So we ate good and we did good: thanks all my friends and neighbors!
Anyways, while I was arranging this drop-off, the guy on the phone told me no one would be in the church office, but the lady who ran the church preschool would be there and to drop off the items with her. No problemo. When I arrived at the church, I was also greeted by a reporter from our local NBC affiliate, WCNC. He was really awesome and wanted to share our story and follow me around a little bit. Nolan thought that was awesome. I walked up to the preschool door and rang the bell: holding a big bag of toiletries, a toddler, and being followed by a cameraman. This was gonna freaking this lady out, I was sure of it. But when I explained to her what I was doing, she was overcome with emotion. Apparently she was just told “Some guy is dropping stuff off for the homeless” but she got no other info. Turns out a very good friend of hers in another state had a child very recently who was born with a CHD and just went through their first heart surgery. I totally didn’t expect this. We chatted for a bit and she got to see Nolan and how well he’s doing. At the end I gave her a big hug and thanked her, and she instead thanked me…she told me it was the best part of her week. I can’t express how touching this was…and how clear it is that CHDs affect us all!
At this point I said goodbye to my wife and Nolan so they could head back home and get out of the cold. Off I went with the cameraman to more stops!
Stop #4: Center for Community Transitions
This is another group I had heard of before but didn’t know much about. When I looked them up online I found that they’re a program to help those with criminal records and their families turn their lives around. A big part of the work they do revolves around schoolwork and tutoring for kids whose parents might be in prison or just getting out. For this program they needed school supplies and I was more than happy to help. So I brought a couple bags of supplies to the Director and Volunteer Coordinator:
They were so thankful for the items and I told them this, and I will forever believe it: I hope that those supplies can lead to a child somewhere in our community being VERY successful in school…and I hope that kid grows up, goes to med school, and finds the cure to CHDs. Wouldn’t that be amazing?! It sounds corny, but I truly hope and believe! To find out more about the amazing work of this group, click here.
Stop #5: Urban Ministry Center
This was my final stop with the cameraman and he was a lot of fun to hang with. Urban Ministry Center is an amazing program that seeks to end homelessness in the Charlotte community by helping the needy find homes, providing food, helping with access to healthcare, and providing laundry and shower services.
This day in particular was pretty freezing, even for Charlotte, so as you can imagine the line to get in this place was super long. My job for the hour was to work in the mail center, which I found interesting. They allow the homeless to use their location for a residential address, so they can apply for jobs, receive important mail, and even apply for a free government cell phone so they can call about jobs and schedule interviews. That’s pretty awesome and I never thought about how much power was tied to having an address. So I hung out there behind the desk and whenever a neighbor would come asking about his or her mail, I’d check their ID and see if there was anything waiting for them. Some people didn’t have anything and they were cool with that…some people had stacks of stuff…some people were upset because they were waiting on something. Nothing too out of the ordinary, though, and I really enjoyed my time there. There were SO many people waiting for a hot meal and for other services…it really made me focus on just how good I’ve got it in my life, even on my absolute worst day. I still have a place to sleep, food to eat, and clean clothes. We take so much for granted. To learn more about Urban Ministry Center, click here.
Stop #6: Levine Children’s Hospital
You know there wasn’t any way I was doing all this and not giving back to the place that saved Nolan’s life, right? I always love going back to visit our “family” in the CVICU. As a visitor, of course. I brought the CVICU staff some more of those sun catchers as well as the heart balloons. But the big part of my visit was to present them with a very special book. In the days leading up to this, I reached out to heart families in our area whose kids were treated in that particular CVICU. I asked for stories, notes, and photos to be included in this book of thanks. The goal was for the book to be kept on the unit so that whenever the staff was having a hard day or was feeling down, they could flip through the pages and see the proof of their hard work and the many lives that were saved. It made me so happy to share this with the staff and I could tell they were genuinely touched by it. We wanted to provide something with real meaning for these folks, and I think we did well.
It’s always crazy to be back on that unit and hear those familiar sounds. I told them Nolan and I would be back soon…but not for long. And that hopefully we’d never have to see them again (of course I meant that in the nicest way possible). Love you guys!
At this point I realized I was starving like a BEAST. So after getting some grub, I was off to the next stop. And I had to hurry because I was a little bit behind schedule now.
Stop #7: Police & Fire Training Academy
In a past life I used to work for the police department as a civilian employee and enjoyed my time there. One thing I realized was that police officers really like to eat good stuff. So I stopped at a local Panera and picked up a bunch of bagels to bring to the Police & Fire Training Academy for the staff and recruits. It was pretty fun to be back in this place, it’d been so long
The receptionist in the lobby was so friendly and we spent time talking about Nolan and his journey. She said she was so happy someone came to do something nice for their team and that it would go a long way. She said she’d share Nolan’s story with everyone and their thoughts would be with him. Can’t ask for better than that, right?
Stop #8: Someone’s About to Get Caffeinated!
So this is the point where the stops became quicker and I don’t have any more photos, but they were still fun. At this stop I pulled into the drive thru at Starbucks and ordered for myself and then paid for the person behind me, leaving behind some CHD info. The barista at the window read over the little card I gave him and he was like, “This is really cool…my daughter works at the ICU at Levine Children’s”. Small world, right?
Stop #9: Another Panera
This stop was kinda funny because I planned to buy someone’s lunch at Panera but didn’t exactly know how to execute the plan since when I got there I was the only person in line. Whoops. So I acted like I was pondering the menu…for a looooooong looooong time. Finally a man came in with his mom. That’s when I pounced: I ordered a gift card and then turned it around and handed it to the woman with the CHD info and said “Enjoy lunch: have a great day!” and left. She looked at me like I was NUTS. And yes, I am. I ended up getting a very nice email from that gentleman about a week or so later. It was really cool of him to reach out to me!
Stop #10: The Final Stop – Charlotte Pediatric Clinic
While Cardiologists get all the fame and the glory, I wanted to take some time on this day and recognize Nolan’s pediatrician, who is an amazing doctor…and an amazing human being. Seriously, Dr. Prosser makes sure that there’s always an extra nurse available to help when my wife visits and so she won’t have to wrestle all 3 kids during the whole visit. She’s super flexible and kind and makes us feel welcome and like we’re family. So we brought her and her staff some flowers and balloons and cupcakes. A very sweet ending to the day!
I was thankful for the opportunity to take a day off work and run around the city doing fun, nice things for people. It’s grounding for me to know that there’s so much need and so many great people doing hard work to meet those needs. Puts my struggles into perspective for sure. Plus I was able to spread the word about Congenital Heart Defects, and I know deep down inside that will make an impact too. What will CHD Awareness Week in 2017 hold? I have no idea, it’s too early for that. So in the meantime, please check out the WCNC story on my CHD Awareness Project: Charlotte Dad Honors Son.
This is the second entry during Congenital Heart Defect Awareness Week (Feb 7-14).
I’ve heard this question asked countless times, whether in person or on social media: what do I pack for the hospital? I’m going to try and compile a helpful list, but it’s by no means a comprehensive list: everyone is different. But these are a few helpful things to get you started:
Clothing…for baby and for you
The clothing issue is where most soon-to-be heart parents have questions. I will say that post-surgery, in my case, clothing isn’t really an option due to a chest incision (or open chest in Nolan’s case) and all the tubes and wires and whatnot. So you can use things like socks and hats, so gather up a bunch of those and bring them to the hospital. Let your nurses know about them because they’re often very willing to help by putting on the hats and socks for you. I know that when Nolan was in the hospital it was always a nice surprise to walk in and see that they’ve put him in some cute little socks at least. While having your child hooked up to all those pumps and tubes, it might make them seem a little less human, it’s amazing how a tiny pair of fuzzy socks will give that humanity right back. Now there will come a time where a lot of those tubes and wires come off – and that’s awesome – so you will eventually need some clothes and I recommend the side-snapping variety, which will give access to the baby’s chest with minimal fuss and you can still stick out any wires from it without a problem. And when you go home you’ll find it makes it easier to dress your baby. While sometimes these can be tricky to find in stores, you can also find them online. View what Target has in their inventory by clicking here. Outfits that button up the middle are good too. Why not zipper outfits? Again at some point the’ll come off all the tubes, but there will remain some leads attached to them to monitor heart rate, pulse ox, etc., and the button outfits will allow the leads to stick out…not so much with the zipper.
And for you, don’t forget to pack clothes for you. You’re there for a long run, especially if you’re not close to home, so pack a couple changes of clothes. And dress comfy too, no need to impress. It’s also helpful to bring something long-sleeve in case the hospital is cold to you.
Swag for Your Warrior
Maybe it’s a fun blanket, maybe a stuffed animal, maybe a mobile. Whatever it is, your heart warrior is still a baby, even though he or she has gone through some major surgery. Having those cute baby things there is very sweet. Nolan is a twin and we believed he was used to being in the womb and hearing his brother’s heart beat, and now he was missing it while in the hospital, so we found this giraffe that would play a heartbeat sound. The curve of the giraffe’s neck and head fit perfectly along the top of his little head, so we’d snuggle it up to him with the heartbeat sound and I really do think it helped keep him calm. If you’re arsty, bring some craft supplies or pictures and decorate the room. It’ll help take your mind off things and bring a personal touch to the hospital room. We decorated Nolan’s room with snowflakes for the holidays and even put up Happy New Year signs, etc. On those quiet nights when Nolan was just maintaining, it was peaceful for me to draw him a picture or make him a little sign. It’ll allow you to bring in a little bit of home, so bring pics of the family along too.
Please Don’t Forget About You
This may sound nuts – you’re there for your kid, after all – but self-care is really important during a hospital stay too. If you like to read, bring a book. Put music you like on your phone and pack some headphones. If you have a hobby that isn’t too loud or weird, bring it with you. There is A LOT of sitting and waiting when you’re in the hospital, and if you don’t practice self-care, you’re going to lose your mind. So bring things that allow you to be you every now and then. Got a favorite blanket and/or pillow? By all means bring those if it’ll make you more comfortable. Let’s face it: if you’re in a more comfortable state of mind – as best you can be – you’ll be a bit more focused, you’ll pay more attention, and you won’t feel like you’re constantly stuck in a blender. It’s ok to think about things for yourself. IT’S OK. It doesn’t make you a selfish or terrible person, it gives you a shot to be the best parent and advocate that you can be.
Pen and Paper
This is something I wish I did when we were in the hospital initially. You are going to be bombarded with emotions and with jargon. Lots and lots of delicious jargon. And lots of people will come in and out of the room saying this and that and looking at this or that. And then when the doctors come to do their rounds, they’ll ask if you have any questions and you’ll be like UHHHHHHHHHHHHHHHHHHH. So bring something to write in, and write down anything you want: what the nurses and doctors said today, any questions you have, any concerns you have, etc. And break that thing out when it’s time for rounds. This will be so worth the effort, trust me. It will help you be a much more engaged parent. Maybe you want to journal your experience: write down how each day went and document your Warrior’s progress. I bet that would be something awesome to keep and show them when they’re older!
Don’t Forget the Details
There are other small things that you’ll need to remember or prepare for. Did you pack your phone charger? You definitely won’t want to forget that. What about those clothes you packed? You don’t want to get funky, so check and see if there’s a washer and dryer on-site that you can use and whether you need to bring your own detergent. If you’re staying at a Ronald McDonald house or someplace similar, you’ll want to check into that too. Don’t forget toiletries too! That goes back to the thing about not being funky.
And how about that hospital food? We got meal tickets everyday, which was awesome…but after 2 months of daily stops there, it started getting a little mundane, no offense to the hospital. So look into places to eat in the area: somewhere you can pop in, grab some grub, and get back without losing too much time. Even better: find if there’s a couple places that will deliver to the hospital.
Have a plan for visitors too. Some ICUs have restrictions and that makes it easy, but if you don’t want a billion people, including third cousin Ray-Ray and aunt Junebug, then you need to have a plan. Tell people early, and bluntly, about your plan. If people are supper offended, let them be…they’ll either get over it or they need to do something else with their time. Your focus is on you and the health of your child.
I hope this list is a good starting-off point for you as you prepare to enter the hospital with your new heart warrior. It’s never going to be an easy trip, so I hope this list makes packing a little easier for you. If you have more questions about what to pack, please feel free to leave a comment: maybe there’s something I forgot to include!
I don’t know if this happens to anyone else, or maybe it’s just me due to special circumstances, but there are occasional moments that bring back early memories of this heart journey. And not like those “Awwww” memories…it’s more of those “Remember how much that sucked? BLAHAHAHAAA.” You ever have those moments? Like something: a visual, a sound, a place; that takes you right back to a moment and just messes you right up. Yeah it happens to me sometimes.
I remember the first time I went back to visit the CVICU when it wasn’t for a patient-related need. I can’t remember the exact circumstance, but I think we were either dropping off gifts for the staff or care packages for the patients that my wife put together. Either way, things were just fine as we drove to the Children’s Hospital, got our visitor’s badges, rode the elevator up, got buzzed onto the unit and walked down the all-too-familiar hallway. We were greeted by all those nurses that had since become like family to us…and it was sweet. AND THEN. IT HAPPENED. In the distance…over the sound of everyone talking…over everything else, I heard it: the beeping of the pulse ox monitor. The faint ding…ding ding…DING DING DING, that I heard so many times. And suddenly I felt my temperature rise significantly and my palms got like this:
I wasn’t full-on Shawn Kemp sweating, but I was close. And for a brief moment it’s like time stood still while the memories came crashing back: being scared, being tired, being worried…all those days after days after days. It was very brief but it felt like forever…and I kinda remember going back to the car and commenting how crazy it was to hear all those familiar sounds. But after that, trips to visit the CVICU were just fine for me.
Last year I had the opportunity to visit the NICU for a purely work-related matter. There are safety checks that several of us on staff are assigned to do and I was covering someone’s assignment, which happened to be the NICU. I was like, “Yeah I’ll do it, no problem.” And I walked around with the Nurse Manager, looking at fire extinguishers and gas tanks and whatnot. Then the time came, and honestly I didn’t think anything of it: the Nurse Manager badged us in to the very nursery where both Grant and Nolan were. The door swung open to the dim light of the NICU and I immediately saw the spot where they both used to be, since they were right there in front of the doorway. While the NICU is very quiet, the sound of my heart beating was deafening. I remember that familiar feeling of sweaty palms and the thoughts that came rushing back…back to those moments where we didn’t know what would happen. The Nurse Manager was talking but all I heard were those Charlie Brown-style wah wah wahs. As before, it lasted a brief moment and I turned to the Nurse Manager and said, “You know it’s amazing being back here…my twins were right in this spot after they were born and I haven’t been back since then.” And we chatted about that briefly and I felt much better and we continued on with our work
The last instance of this was very recent: I was with my co-workers doing a very fun video project and we were going throughout the hospital filming staff doing fun stuff. We eventually made our way to the OR floor. As their Nurse Manager wrangled up some staff for our video, I saw it. Straight ahead of me was this little pre-op holding area…the very area where we made the long walk to bring Nolan before he went in for his Norwood procedure. That moment was seared into my mind because it was the most scared I’ve ever been in my life because I didn’t know if that kiss I planted on his little head would be the last. Being there was very intense for me because – let’s face it – I would’ve never in a million years thought I’d be hanging around the OR floor. I mean come on. But here I was, and the feels were real, man. I stood and stared, and stood and stared. Finally a co-worker came up to ask me a question, which I sorta half-answered. Then I turned to him and was like “Man, this is crazy being down here,” and I pointed to this little holding area and told him all about it. He thanked me for sharing the experience and said it’s a good one to share since it can help clinical staff understand the level of anxiety our patients and families go through. I was thankful for that and it honestly helped me feel better. From there I was fine, the video was awesome and the OR staff were hilarious.
I’ve written before on this blog how I do think Heart Parents suffer from PTSD. I firmly believe it. I also believe that it’s different for everyone: I’m sure some people have it in extreme forms and some people will just get these flashes of it. Either way, I’m sure as you’re reading this you’re remembering a moment where this has happened to you. And it’s ok, it doesn’t make you weird or defective. And it doesn’t necessarily mean you need to seek any kind of professional help (though I’m not the person who should help you decide that). In my experiences above the one thing that was a common thread in these “Raging Remembrances” was the act of calling out what I was experiencing and talking about it. I’ve found that if I say “Hey this reminds me of such-and-such” it allows me to acknowledge the feels are real and that I understand them.
I’m not saying you have to be all touchy-feely or whatnot…I’m saying I hope that you get comfortable with sharing your momentary Raging Remembrances…that at least brings someone into the ring to be on your side. Heck you don’t even have to share it with a fellow heart parent, just share. If you talk about it, you avoid packing it away. Sure you can get away with packing one or two or three of these memories…but over time you’re gonna run out of room…and when you try to stuff one more thing down it’s going to come bursting out and it’s gonna be U.G.L.Y.
While it does take some bravery to talk things out, remember that you don’t have to go into the WHOLE story. Just a dab will do you. Give it a try the next time something sets off your Raging Remembrance.
Can dads experience PTSD while their child recovers from intense heart surgery? In short, yes.
You’ve read this blog, and you might be going through it yourself, so I don’t have to tell you that having a heart baby is tough. You get this diagnosis (if they even find it early), learn all about this CHD, then you’re faced with this grueling 7-hour wait while your 5-pound baby goes through a very serious heart surgery. Then you see him struggle for many, many weeks with his chest open and a machine doing his breathing. It becomes your life, and yet somehow your old life still continues outside that hospital room.
You have to go back to work and deal with people and their issues. Man I remember going back to work…I wasn’t ready. I was this grizzly bear/Incredible Hulk hybrid just waiting to tear someone’s head off. It was tough. I didn’t want to be at work, I wanted to be with my son…and even then I could do NOTHING to make him better. Just hours of sitting there and praying that he would be ok, that he would get strong and grow up to be whatever he wanted.
There was a time, here and there, that I had trouble sleeping because of bad dreams or bad fears. There were times I felt like I was about to lose my mind. The good thing is that Nolan had some REALLY great doctors and nurses on his side, and they did a lot to keep me assured and comfortable. I had a chaplain I used to work with remind me to count my blessings. And it worked: Nolan turned the corner and I started to feel a little bit more in control. There were days leading up to his 2nd surgery where I could feel the worry creep back, but his surgery went well…and even a trip back to the CVICU wasn’t bad because he was in there for less than a day and his recovery overall was quick.
Around the holidays, my wife and I delivered some care packages to CVICU and that’s where a few things came back, it’s amazing. The smells, the sounds…I started to feel a little uncomfortable and sweaty. It was a totally weird feeling because I was there to do something good, but I was suddenly reminded of those very long days and nights. I’ve since been able to go back to CVICU without a problem.
So yes, I do think heart dads can suffer from PTSD: this is the most intense, fearful thing a guy can possibly go through. I know PTSD is usually associated with war – and that’s true – but it can also show up in so many other instances as well.
This is a REALLY great article about the subject: http://smallbeats.childrensomaha.org/can-parents-experience-ptsd-childs-heart-condition-part-1/ and I wanted to highlight one interesting tidbit:
So yes, it happens. And it’s nothing to be afraid of. I encourage you to be honest with how you feel about your heart warrior’s process. It’s part of why I started this blog: it’s a way to share and get those things out. I encourage you to find a really good support system: family, friends, church, whatever…as long as it’s healthy. And connect with other heart parents, too…that’s why I’m here!
Nowadays I don’t feel like I did that one day at CVICU. In fact, I get the opportunity to share those experiences with people as part of my job and I’m thankful for that opportunity. Yes, sometimes I get bummed that Nolan has HLHS and I just wish he didn’t have it, or I just wish he didn’t have another surgery to go. But I’m also really thankful he’s with us and that I get to see him walk around, eat some food, be silly, and try to climb on me. Those things definitely outweigh the bad.
For the past few weeks my wife and I have been doing these free youtube workouts from Fitness Blender. They’re pretty awesome and you should check them out. Anyhow, at the end of every nearly barf-inducing workout it will say “WORKOUT COMPLETE” on the screen and it feels like you made it. Then you want to eat a whole pizza. I’m just kidding.
Anyhow, it feels good to accomplish something, whether it’s a workout, assignment, or a big project. In my last post I wrote about my 32for32 Project: I was going to do 32 acts of kindness for my 32nd birthday in order to educate people about Congenital Heart Defects. Well I did it! PROJECT COMPLETE!
I worked pretty hard to plan out this project, choosing where I would go and when, and I did a lot of early legwork to download wish lists and contact the people I needed to contact. I did a really awesome interview with the Union County Weekly, who posted a wonderful article on their front page, and I even did a quick radio interview with New Life 91.9. As we got closer to the 14th, the day the project was to start, I ran into some problems…SNOW.
No, not him.
So the Charlotte area decided to have the most snow in a decade. A whopping 8 inches. Now where I’m from in Connecticut, that’s child’s play…but here? Freakin’ APOCALYPSE. There’s no snow plows and everyone just gets stuck at home. Well of course, the snow was still on the ground on Thursday, so I got several messages from my 32for32 stops that they would be closed on Friday. Great. I ended up having to be really creative with changing my schedule around to accommodate everything or even add new things. In the end it all worked out.
So on Friday we decided to brave the snow together as a family (it was pretty melty by then) and hit the ground running. By Monday the 17th at 4:30pm, I was DONE with the project. Here’s the list from 1 to 32:
1. Welcome our new neighbors
2. Help a neighbor get her car up her snowy driveway
3. Giving scratch-off tickets to a waitress at a local pizza place (she won $20)
4. Buying someone’s meal at that pizza place
5. Buying a gift certificate from the pizza place and giving it to a cashier at Fami…ly Dollar
6. Bringing food and diapers to With Love From Jesus
8. Paying for someone behind me in the drive-thru
9. Bringing fresh cinnamon bread to Union County Health Department Employees
10. Bringing clothes for a tough little heart baby
11. Donating food and other items for the Union County Community Shelter
12. Giving Blood with the Community Blood Center of the Carolinas
13. Going to Great Clips and paying for someone’s haircut
14. Bringing lunch to one of the Producers at church
15. Donating clothes to Goodwill
16. Giving a gift card to a Starbucks barista
17, 18, 19, 20. Cards for some special people
21. A card for a deployed soldier via Operation Gratitude
22. A gift for our mail carrier
23. Reading a story to kindergarteners at Poplin Elementary School
24. Donating formula to H.E.L.P Crisis Pregnancy Center
25. Bringing bagels and CHD Awareness bracelets to nurses at Levine Children’s Hospital
27. Bringing donuts for the residents of Ronald McDonald House
28. Donating clothes to Crisis Assistance Ministry
29. Donating 20 pounds of items for Second Harvest Food Bank
30. Donating clothes to Second Chance Boutique
31. Bringing pantry items to Matthews HELP Center
32. Bringing 4 dozen balloons to abused & neglected kids at the Children’s Attention Home
WOW. I was really humbled by the experience. I met some great people, I hopefully made an impact, and I got to share the news about Congenital Heart Defects!
On July 17, 2013, after all his necessary pre-sugery work, we brought Nolan to Levine Children’s Hospital. I was pretty tense. Deep down, I knew and had faith that everything would be ok, but there was also the memories of the long recovery last time, with all its ups and downs and the fear that came with it. Luckily for us, Bekah’s college roommate Arianne came to stay with us and support us through this time. It was good to have someone there.
We took Nolan to the same room that he was in before his cath. They took all his vitals and we worked on keeping him happy. At this stage he was such a smiley little guy and whenever he was happy, be would kick his feet rapidly: I called it the Happy Bike. The anesthesia team came in to meet us and chat with us a little bit about the procedure. From there we prayed for our little guy and then it was time.
If you remember from way back in this blog, I talked about us walking with the nurses all the way down to pre-op with Nolan before his Norwood Procedure. We wouldn’t be doing that this time, and I wasn’t sure why. Instead one of the anesthesia team members held out his arms and I handed over our 7 month warrior…my hero…to be cut open for yet another time. While I was clinging to the faith I had, it was no less heartbreaking to see my little guy go. Next, though, it was time to go to that stupid waiting room that I hated so much. We checked in with the lady at the desk and saw that another of our friends, Karen, was already in there waiting for us. It was quite the surprise because we weren’t expecting her. It’s always good to have company during this stage.
And just like the first time we waited: we talked, we read, we watched tv, surfed the interweb, stared off into space. And periodically we’d get updates from the O.R.: anesthesia was completed, the first incision made, everything’s looking good, etc. Finally we got word that the procedure was complete and that Nolan was doing well, but it would be a little bit before we got to see him. I took that opportunity to go to our favorite Malaysian Restaurant to pick up some lunch. We ate and were very happy, but we were dying to see Nolan.
Finally we were allowed up to see him in the CVICU. It was crazy being back on that floor with its familiar sights and sounds and people. What was different this time was that Nolan was doing AWESOME and all those nurses were thrilled to see him and how well he was doing! Nolan was still a little out of it and was intubated, but all signs pointed to him doing well…AND His chest was closed! YES!
We held his hand and talked to him as he came to. He was in some discomfort, but he was looking great…even his color was amazing. The nurses and the rest of the heart team were very happy with his progress and the goal was to remove his breathing tube and get him up to Progressive Care within a day. And that’s what happened! Less than 24 hours after surgery, Nolan’s tube was out and we were already out of CVICU, which was bittersweet. Back to Progressive Care, where things were a bit more challenging. This time, though, we knew what to expect.
It was amazing how much better Nolan looked after the Glenn Procedure: his color was much better and not so pale, and his oxygen sats went from low 70’s pre-surgery to 85 post surgery. YES! Now for the recovery phase…one day at a time…
This is the part where I’m sure you want to clone yourself. After they boot you out of the hospital, after your initial freak out and hyper-vigilance, you will have to deal with the tsunami of appointments. Nolan had a cardiology appointment every week, then he had GI appointments, regular pediatrician appointments, then there were appointments with nurses at home, speech therapy at home, and physical therapy at home. It was nuts and my wife did an incredible job juggling it all since I had to be at work all the time.
I did go to Nolan’s first cardiology appointment, though, and it went well: they were very happy with his progress so far. But man what an effort to pack that kid up with the CHAMP binder, sat reader, feed pump, and all the regular baby stuff on top of it. WHEW. Eventually the amount of appointments will calm down, depending on your child and his or her progress. This will also be the stage where you realize your life as a parent will no longer be a “normal” one…it’s going to be crazy, but every day your heart warrior wakes up is a great day: remember that.
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…
It was so great to have Nolan off the ventilator! He was only getting oxygen via a nasal cannula and he was alert and progressing bit by bit every day. Sometimes I worried about him being in pain, but the nurses assured me that the meds he was on was keeping him in la-la land, but without being completely sedated to the point where he was knocked out. They likened it to being on laughing gas. That was ok with me, I guess. The cool part was that my grandmother came down from Connecticut to visit us: it’s always good to see her, especially since she gets a chance to see all of her great-grandkids. I know not many people get that opportunity. Oh yeah, and the awesome food she makes is a MAJOR perk 🙂
Grandma with Grant:
Grandma with Hudson:
One night I decided to take her to see Nolan in the hospital. She had gone once already to see him, but this time it was just the two of us. This night, though, I really wish my Grandmother didn’t come. We got to Nolan’s room and as usual I asked the nurse how he was doing. She said they were continuing to back him off of oxygen to see how he would do on his own and that he was doing ok. I looked up at his monitor and noticed that his respiratory rate was a lot lower than usual. I pointed this out to the nurse and she was like “That’s ok: as long as it doesn’t go below 20 or so, we’re fine with that.” Then she went out to the hallway so we could have a visit. I can’t exactly remember how long we were there, but I noticed that Nolan’s respiratory rate started to go down, down down, til it was right at 20. Then suddenly it dropped down to 10, then to 6 and I ran to get the nurse and the respiratory therapist. They jumped right into action and I jumped right into freaking out. I was pacing back and forth and was really nervous and it was rough on my grandmother too. The respiratory therapist basically lifted Nolan off the bed and began to massage his back…as long as he was doing that, Nolan was breathing ok. If he stopped, his breathing would putter out. I felt like I couldn’t breathe either, this couldn’t be happening.
Finally one of the doctors came in…she looked like she was 14 years old and I don’t remember ever meeting her. She pow-wowed really quick with a couple other people and then quickly told me, “Ok here’s what I think it is…the sedatives are a little too strong and he’s used to being on the ventilator so he’s relaxing too much, expecting the vent to kick in. We’re going to give him a medication that will pull him out of sedation but not so much that it will put him into withdrawal.” I was like “Wait, what?” And I asked her if she was sure it would work. She told me she thought so, but you just never completely know. The respiratory therapist continued to massage Nolan, I continued to pray and freak out.
An eternity later (or so it felt) the meds arrived and were administered. We all watched, and I really think we were all holding our breath. Ironically the only one seeming to be breathing was Nolan (as he was being massaged, of course). Within minutes, his respiratory rate jumped up, the Respiratory Therapist put him down, and he was breathing just fine. JESUS. That was…just, wow. Crazy. I thanked the female Doogie Howser and the rest of the staff, then gave Nolan a kiss on the head and gave my Grandmother a big hug. Then I watched Nolan like a hawk and his respirations stayed strong. Thank God for a smart, quick-acting doctor and staff. They are incredible and saved Nolan from a definite emergency.
Before I had to leave for the night, I leaned down close to Nolan and said, “I love you…but don’t do that again. EVER.”