Hey friends, I hope all is well in your world and that you’ve enjoyed your holiday season! It’s really hard to believe that 2017 is almost over: the final bit of this year was really eventful so I wanted to give a bit of an update on what’s going on in our world.
Party Time, It’s Excellent
I’ve always enjoyed the month of December because it’s always had my favorite holiday in Christmas. Since the twins were born, though, it’s given us even more opportunity to celebrate! This year the twins turned 5 years old and I just love celebrating their birthday, especially now that they’re starting to get old enough to be more and more excited about it. Not to mention that every birthday with Nolan is a really big one! We went to each of their schools to celebrate their birthdays with their classmates. Nolan didn’t want cupcakes for his class, however…in true Nolan fashion he wanted to share some Scrabble Cheese-Its with his class. Remember, this kid is obsessed with the ABCs, so of course! It was so cute to see him in school interacting with his classmates. We got to feed him and see excited his little friends were to get their crackers. It was really cute and it made Nolan happy. We even asked him if he wanted us to take him home early and he said no thanks, he wanted to stay in school. I’m so proud of him…he’s going to school from about 9:30am to 2pm and he’s totally rockin’ it! Grant, on the other hand, had his birthday celebration at school complete with cupcakes and it was so much fun to see him and his classmates with frosting-smeared faces. Too cute! We followed it up with lots of other celebrations with family and friends and, of course, at home. On their birthday I always want to just scoop them up and squeeze them…because I’ll never forget how absolutely insane their first day on this planet was. And I’ll never forget how much they’ve both been through, and I’m eternally thankful.
Happy Heart Day, Nolan!
A very important day of remembrance for me is December 17th, which is when Nolan had his first heart surgery – the Norwood Procedure…now 5 years ago. I always spend time on this day remembering how I felt: on one hand it’s kinda like punishment because I remember being so scared, to the point of paralysis…but to me it’s important to connect with that feeling from time to time. I don’t wallow in it, but I do talk about it with people. Most importantly I look upon that day as the start of Nolan’s heart journey, and I remember how much he’s been through and I look – with joy – on the strong little guy he is today. And when you look at it that way, you can’t help but to be so happy to celebrate his heart day:
Christmastime is Here!!!
Man, Christmas with 3 little boys is totally bonkers, and the craziness began like a week before the actual holiday, as we celebrated with other family and friends. So the kids were definitely ramped up for the actual day! It was so fun watching them rush down the stairs and to be so excited by the gifts that Santa (and mom and dad) got for them. I love the smiles and the laughs and the hugs. And hey, we even got a decent pic with Santa:
And Lots of Other Good Stuff, Too
Lots of other good stuff happened in December too. We had another feeding appointment at UNC and it went really well: Nolan has really cut back on the vomiting (to nearly nothing, knock on wood) and is eating purees more regularly and eating things like Cheese-Its, Rice Krispies, and some mashed potatoes. Definitely a huge move in the right direction!
Nolan also had a really great cardiology check-up: his doctor said his heart function looks really good and we won’t be back for another 6 months or so!
After Christmas we took the kids to a trampoline park to play with some friends. As you know, Nolan looooooves trampolines and jumping, so he was very excited about this. Shockingly, though, he spent the most of his time “going on an adventure,” as he calls it. This meant he climbed up, through, and around this huge playground structure inside the trampoline park. I mean look at this kid:
I was standing like 2 levels below him when I took this picture. He proceeded to climb way up and go down the long, twisty slide all by himself. Why is this significant? Well after Nolan’s Fontan Procedure, I noticed that he was developing some fears that he didn’t have before. When we’d go to any playground, he no longer liked to climb up like he used to and he definitely didn’t like to go down slides. At his first parent-teacher conference at school, his teacher mentioned how much Nolan loved getting on the playground and going down the slide…and I was like “Hold up…are we talking about the same Nolan?” Apparently the Physical Therapist at school has been working with him on this, plus seeing his friends play has spurred Nolan to do the same. And you should see this kid go! Off he went on his “Adventure” and he even told me I didn’t have to go with him. Definitely a proud daddy moment for me…it really symbolized how much progress he’s made. Keep climbing, big guy!
So to all my friends reading this, I hope this year was a really good one for you. And if it wasn’t, I hope 2018 is a fantastic one for all of us. May your new year be full of love, kindness, gratitude, victories (however big or small), empathy, and compassion. Don’t let the little moments pass you by without being thankful, don’t forget to take care of yourself, don’t forget that the work of your hands is sacred, and don’t forget to give lots of big hugs.
And finally, in case you need a random smile, and the days get a little rocky, you can always do what Nolan does – dress like an owl and dance to Laurie Berkner:
HAPPY NEW YEAR, EVERYONE!
Hey Friends! Don’t worry, I didn’t forget you: it’s just been quite a busy month and some change. December was a really great month, though, I wanted to share with you everything that had been going on. Nolan got to do a lot of fun things like visit the organic farm with his brothers:
And he even got his school pictures. I mean look at this cute kid:
But one of the big reasons for celebration was Nolan and Grant’s birthday! Our big boys turned 3 and it’s always a great time with our family. We’re so thankful for our double-trouble. We even got to celebrate their birthday at school:
A week later, on Dec 17th we always mark the anniversary of Nolan’s first surgery, the Norwood procedure. We never forget how scary and stressful that time was, and my wife spends each year gathering items for the kids and families in the CVICU so we can bring them to the hospital on the anniversary of Nolan’s Heart Day. This year she collected lots of socks and headbands and also her famous little heart hats:
The twins’ school also had a silent auction where we stumbled upon this incredible Tin Man, which we won and gifted to the pediatric cardiology office as a way of thanking them for all they do:
And, of course, we can’t forget to remember just how far Nolan has come in the 3 years since his Heart Day. As I see him play and hear him sing his ABC’s, it really fortunate to have every moment with this little boy…you’ve come a long way, buddy!
Finally we couldn’t wrap up December without one more big celebration…CHRISTMAS! Christmas is already my favorite holiday and I’ve grown to appreciate it even more now that I have kids. I love watching the joy in their eyes when we set up our tree for the first time or as they see a new present to play with. I remember Nolan’s first Christmas, which was in the hospital, and the generosity of strangers as his room was filled with presents. It’s just such a special time for us and the kids all got some pretty cool stuff this year. For Nolan, his favorite gift was a big boy 12″ bicycle that looks like a motorcycle. To be honest, I was worried his short little legs weren’t going to reach the pedals…after all, he just started riding a little tricycle just last month (yes, it took that long for him to get to that point physically). But on Christmas day we brought him downstairs and he was like “A MOTORCYCLE!” and immediately wanted on. His feet reached the pedals but he didn’t have the strength to do it…so my wife and I sacrificed our lower backs and pushed him round and round the house (it was raining Christmas day here) and he was just SO happy. In fact, he refused to open any other presents because he liked the bike so much:
But then….THEN…something clicked in Mr. Nolan. He started to pedal the bike…completely on his own. And I will tell you something, that kid never acted more happy and free as when he can pedal his own big boy motorcycle around the house. And THAT, my friends, is some real Christmas joy right there! Far and away my favorite memory of Christmas this year.
I hope everyone had a great December and enjoyed Holidays with friends and family!
Now that our twins celebrated their first birthday, it was time to look ahead to even bigger things: Christmas. But no no no, this wasn’t going to be Christmas all snuggled up at home just the 5 of us and the dog; we were going to pack everyone up and drive down to Florida to be with my wife’s family for a week. Before we get to that, let’s talk about home. Last Christmas was spent half at home and half at the hospital with Nolan, who was still intubated with his chest open. I gotta tell you, spending Christmas in the hospital is surreal, and while he was getting awesome care as always, it just kinda sucks the joy and wonder out of Christmas, since the only wish I had was to have Nolan home. Now that he was home, we had the chance to really enjoy Christmas as a whole family. As Hudson gets older, he absolutely loves Christmas and the twins seemed to enjoy the tree and festivities:
Now onto the travel part of our tour. We’ve made the trip plenty of times: when it was just my wife and I, it would take us somewhere around 7 hours to make the drive. When Hudson was born and we brought him, it was a little bit longer, but we were still able just to pack up the car and go. This time, preparations were just bonkers. Not only did we have to take the van, but most of the seats in the van would be filled with people. Me and Bekah in the front, Grant and Nolan in the next 2 seats, then Hudson in the back with the other half folded down. And we loaded the mess outta that van. We had a suitcase for me and Bekah, a suitcase for Hudson, and one for the twins. Then we had to pack snacks, formula, feed supplies for Nolan…ugh, just thinking back on it makes me itch.
For me, though, the worst part wasn’t so much the packing or preparation…it was the growing paranoia I had as our departure date got closer. I started to focus a whole lot on all the “what if’s”: What if Nolan’s feed pump stops working? What if something happens while we’re driving? Will we be able to find a decent hospital? Will that hospital know how to treat Nolan? I know, I know…paranoid. But for me they were legit concerns: we’d been through so much with this kid, that I didn’t want anything to go wrong. If I forgot to pack socks or something, that’s one thing, but medical problems are another. My father-in-law is a Doctor, but he was still 7+ hours away. We just had to GET there.
We made the decision to (potentially) make the ride easier on ourselves by splitting up the trip both ways and staying in a hotel for a night. We decided on Savannah as a good stopping point. I priceline’d a hotel (love me some Priceline) and it seemed we were all set to go. As they say in infomercials, though, “BUT WAIT!” As we were starting to load up the car, Nolan was taking a nap in the swing. I walked over to check on him for a quick minute and noticed that his feet and nail beds were a little on the bluish side. Not full-blown Smurf, just a little bit. Sometimes that would happen to Nolan if he’s got a stuffy nose or gets super fussy. Usually we’ll calm him down or get him sitting up for a bit and he’s fine. This worried me a bit. We hooked him up to the sat reader and believe it or not they were reading in the mid-80’s, so it was a little weird. Eventually, though, it settled down and he was just fine. Turns out he had some horribly bad diahrrea, which made the first part of our trip a BLAST (lol get it?). Sorry, that was bad.
Anyways, off we went…and our drive went well: we had Hudson entertained in the back and the twins were relatively happy and we were making good time. We were working our way through South Carolina, maybe 90 minutes or so from Savannah, when we hit traffic. I HATE traffic. I know everyone does, but I can’t stand it. The 90 minute drive took seemingly forever, and when we finally got to Savannah we were all tired, hungry, and cranky. Luckily, though, we managed to have a good night’s sleep. After that we hit up Tybee Island for some winter beach fun before hitting the road again:
When we got to Florida, the kids had a lot of fun. My wife is from a HUGE family, so there were lots of people to play with the kids. Nolan got over the squirts and was back to his happy self again. We even got to go to LegoLand as a family. Hudson loved that, but even in the winter, Florida proved to be a little too hot for Nolan. He was sweaty and cranky and we knew we couldn’t have him outside much longer. Luckily LegoLand has what’s called the Baby Depot: it’s an air conditioned building with a changing/feeding station and a play area for little ones. Grant crawled off to play legos with Hudson, and we laid Nolan down on a big bean bag chair in the corner. As soon as he hit that chair he zonked out. Poor little guy. Yes, extreme weather is difficult for heart babies, you have to be really careful of the heat as well as the cold. I have a feeling most of our family trips will be in the Spring and Fall.
We eventually made our way back – with another Savannah stop in between. It was a really good trip: no major issues with Nolan aside from the early tummy troubles. None of my paranoia came true, which is great. I can’t lie, I was expecting it to be a trip of horrors, full of screaming kids and an extreme lack of sleep. But I was pleasantly surprised. I know we won’t be able to make tons of trips with our little ones, particularly Nolan (it’ll be easier once he’s eating by mouth, hopefully)…but we got the most out of this one and I will cherish the memories.
Christmas is my favorite holiday, by far. I love the time of year and I love giving gifts. This Christmas, however, was a bit different. Yes, the tree was up and we had gifts bought and wrapped, but having Nolan in the hospital during Christmas made things feel just a tad off. We did get to take Hudson to see Santa at the clubhouse in our neighborhood, and that’s always fun
He’s so big and such a good big brother. The great thing was that he’s at the age where he can start to get into Christmas, so unwrapping gifts with him was a lot of fun. Even Grant got into the festivities:
Otherwise, Christmas was a blur. I can’t remember what we ate, I can barely remember what people got. It was a complete blur. Of course the other thing is that we had to make time to go to the hospital to see Nolan. At this stage he was starting to slowly come out sedation and would open his eyes from time to time. It was good to see those beautiful eyes, but sometimes they just looked so sad and it broke my heart. Sometimes his mouth would open like he was trying to cry, but nothing would come out due to the breathing tube in his throat. As we prepared to head to the hospital, the first thought in my mind was that this Christmas kinda sucks because Nolan was still in the hospital and we couldn’t have him home and be celebrating all together as a family. On the long drive down, it didn’t help that no one was on the road and nothing was open. It was Christmas after all. We got to the hospital and did our normal routine of riding the elevator to the 6th floor and being buzzed in and making our way to Nolan’s room. When we got there is when my tune changed. Nolan’s room was facing the front of the hospital, so it had a really big window, and all along the window sill were Christmas gifts from complete strangers. There was little stuffed animals, a pillow pet from another heart family, some books, and even a stocking of things for us. I was just completely blown away. Whoever left these things didn’t know us, but did it out of kindness. And you know what? I really needed to see those things there; not because it was free swag, but because it was done out of love. I started to count my blessings: I had to healthy boys at home, and Nolan was doing better and better in the best hospital around. I realized that in spite of our troubles, we had it real good. We had a home, we had food, I had a job. Thank you God! It was a great Christmas after all. And even better, Nolan’s nurse took a picture of Bekah and I with Nolan, which was our first picture together with him:
Now in a totally non-serious note, I do want to take a second and highlight my fav gift that was in Nolan’s room that day. A church (I don’t remember which one) brought Nolan this stuffed animal and blanket combo, and if you squeezed it, it would make the sound of the animal. Nolan’s animal? A GIRAFFE. What sound does a giraffe make? I just had to know, so I squeezed it. And I was TERRIFIED. Apparently a giraffe sounds like a combination of of a chimpanzee and a kookaburra both being set on fire. It was one of the funniest things I’ve ever seen/heard and I couldn’t help but show it to like every nurse and staff member at the CVICU. That thing was hilariously freaky and I am SO thankful to that church for bringing it lol.