Tales of TET Baby: Transitioning to Different

The thing that has made it so easy to live in denial about Zane's heart condition for the past seven years is the fact that nothing about it made him any different from other children. He didn't take any medications, he had no restrictions, we didn't spend days going to doctor's appointments, and by all outward appearances he looked like a perfectly healthy boy. This, and the fact that he has no memory of his surgery, made it really easy for him to love his scar and to show it off to everyone he met. To him his scar was just a fun thing that made him special, a badge proving how brave he was. Turns out his scar is really a badge showing how brave he will have to be.


The past week since his ER visit has been a struggle to say the least. It has been a lot of adjusting to our new normal. Specifically Zane's new normal of frequent episodes of chest pain and needing to take breaks from playing to rest. It is so hard to see him go through this, but he has dealt with the pain and reporting his events well. There have only been a few times where I saw him rubbing his chest and he denied it hurting, possibly because he wanted to keep playing. His chest has hurt a few times at school, the longest being yesterday when it hurt for an hour. It also lasted almost that long after baseball practice, which leads to a very tense time where I try to decide when we should head back to the hospital.


The biggest adjustment, however, hasn't been these things so much as his adjusting to the fact that, for the first time in his heart journey, his condition has made him feel different. It started with his anxiety about returning to school where people would ask why he was gone on Tuesday, expect they didn't even remember because Tuesday was followed by two snow days. Then since he continues to have chest pain he's having to tell his teacher every time his chest hurts, so she can write down the time and what he was doing. His friends ask him about it and he can't explain it, different. Then his cousins, God bless their sweet souls, were concerned about him getting hurt when they were wrestling jumping because it might hurt his chest. MJ was very loving and concerned, asking him if his heart hurt multiple times when they came to play. Very simple things, all necessary, but all making him feel different than everyone else. As we all recall feeling different, or other, as a child is the worst thing imaginable.


For Zach and I the new normal has been making the transition out of denial about the fact that we have a child with a heart condition and into the role of parents with a sick child. Telling teachers and coaches about his condition, in most cases shocking people with the fact that he had a heart condition at all. This transition is complicated by the fact that we don't really have a clear understanding what we should do when his chest hurts beyond letting him rest if he needs to. No one can seem to tell me at what point we need to head back to the ER in any terms that a seven year old would ever be able to articulate. My seven year old cannot tell me if he feels like he's going to pass out. He sits down because he feels tired, but I can't even explain what that feeling feels like so how is he supposed to know that without experiencing it. We've had a lot of hard conversations with people that are then  followed by that awkward silence, where no one knows what to say, so they don't say anything, and you just get the sad eyes.


That's a whole different blog post about the sad eyes and the people who disappear in a crisis. My advice, if you think you shouldn't talk about the terrible thing someone is going through because you're scared you'll remind them of it or make it worse, is you're crazy! They never forget, it's all encompassing, they never stop thinking about it, you aren't going to make it worse or remind them about it. Just acknowledge that's it terrible, obviously fix it, but just be there, and speak to them. Not speaking to them makes the situation worse. Ok that's the brief version of my thoughts on sad eyes.


As a nurse, and a mother of a sick child, there is a whole different level of pressure placed on me. The doctor wrote in his ER note "feels comfortable sending patient home with mother, who is a nurse." Awesome, thanks for the compliment. I am not comfortable and have no idea what I should be looking for. So this week I broke a cardinal rule of my heart mom journey turned to the internet. I was very selective about what I read. I was really only trying to get a refresher course on how the heart works and what causes PVCs. I did not research how any of that is related to Tetrology of Fallot.


The short version is the electrical impulses in the heart should all be originating from the right atrium, then traveling to the ventricles, making them contract and send blood to the body. In a PVC (premature ventricular contraction) the impulses start in the ventricle, so it prematurely contracts, before it's been able to fill with blood. This can cause low blood pressure, which would lead to the feelings of dizziness/passing out. This also can cause chest tightness/pain. This can be random, or due to increased caffeine/drugs, or in Zane's case caused by having increased heart size, things implanted in his heart, and a valve that doesn't work. It's just a sign that his right ventricle enlargement is taking a toll. It's not something that will get better. I did my research, it helped me understand what was happening, and be able to explain it better. Then I only briefly had a panic attack after my research.


Being the nurse mom also means I get to spend hours on the phone trying to break down the brick wall that is put up around physicians. It's impossible to break down by the way. You cannot speak to a pediatric cardiologist on the phone, that's just how it is. I've spoken to his nurse multiple times, who doesn't seem to have much insight. I have also almost lost all my religion on the scheduling person at his office as well. However, after a week of pounding on the door Zane is scheduled to get his holter monitor tomorrow morning. It's a new type that is worn for a week, so hopefully we get a clearer picture. Of course the results come from somewhere in California and take two weeks to receive so the waiting, in this horrible in between place of my child's heart failure, continues.

Tales of a TET Baby: ER Badge

There are very few heart mom badges that I have collected. We have been extremely blessed in the past seven years, after surgery, to only collect the yearly cardiologist appointment badge. That really doesn't even count, it's not traumatizing, it's fine, just a one day reminder of Zane's heart condition. I didn't realize it wasn't worthy of a heart mom badge until now.

A few days after Zane's cardiology appointment, at the beginning of the month, he started complaining of his chest hurting. Initially I completely blew it off as his nervous imagination thinking about his future surgeries and everything we'd talked about in this appointment. He continued complaining of it randomly, but for only short little bursts. He would come home from school and calmly tell me his chest hurt a few times at school, but didn't seem concerned about it. On Thursday I picked him up from school to go to the doctor (to check on a soar throat I'd also been ignoring). He had just left recess and said his chest really hurt. By the time we got to the pediatrician's office it was better, maybe five minutes. At the appointment he tested positive for strep and his pediatrician basically told us either the chest pain will stop after a few days on antibiotics or we need to see his cardiologist. The doctor was in no way trying to weigh in on Zane's heart problems.

Fast forward to Monday, Zane had been out of school for four days with the long President's Day weekend. He hadn't mentioned any chest pain to me, I kind of forgot about it. That evening after dinner the boys went and played catch in the backyard. They weren't out there for a long time, and they weren't playing very hard, when Zach brought Zane in because his chest was hurting. He seemed to be in a lot of pain. To be very clear Zane NEVER complains of pain. He pulls his teeth out for money, he has had two by fours dropped on his head and never complains. His pain tolerance is very high. This was the first episode I was really a part of that lasted very long and seemed like he was really hurting. So I decided to listen to his heart. At this point my mom hat was still on, I'd missed the moment I was supposed to take that off and detach myself from him and start thinking about him as a random heart patient. So when I listened to his heart, and heard beating very fast and skipping beats, I was fully attached to this kid and things spiraled out of control quickly.

The next ten of fifteen minutes were some of the absolute worst in my parenting life. I've never seen Zane truly scared of anything. The kid has no fear, he is tough as nails, he picks up huge snakes with his bare hands. However, when I said I thought we might need to go to the ER if his chest kept hurting, he was truly terrified. I tried to calmly explain he wasn't having surgery today, they just needed to check him out, but it was too late. He spiraled into a full blown mental breakdown, crying, mess. He was terrified of surgery, he was begging to not have to have it done, asking why we have to do it. Well the only answer to that is if you don't have surgery you can't live. I mean we said it nicer than that, but that's the real reason. Then my son, my big strong boy, was balling, saying he didn't want to die. Followed by his brother crying that he didn't want Zane to die, and he was scared. You get the idea of how horrific this scene was for everyone involved. I wouldn't wish, hearing your child cry, begging not to die, on my absolute worse enemy. Especially when they are actually going to be facing life or death situations.

In the back of my mind, in the midst of this terribly scaring moment as a parent, I knew that I was the one who was going to have to decide if he needed to go to the ER. I knew I had to put on my nursing hat and quickly. Somehow we got everyone calmed down, Zane took a shower while I made a concerted effort to switch hates. It felt like there was an actual switch I flipped in my brain. A switch that took me from devastated, terrified mother, to pediatric nurse. When I have my nurses hat on nothing phases me, not my crying son, not the prospect of spending the night in the ER, or being admitted to the hospital. I can calmly discussed his condition and current situation with a few of my nurse colleagues. Eventually I called the most experienced nurse I know, who just happened to be the Clinical Coordinator at the Children's Hospital Monday night, who quickly and decidedly told me to come in. After an hour calming down Zane's chest still hurt. It was time to go. I calmly packed a bag in case we were admitted. I prepped Zane for what to expect. I kissed my other boys good night and off we went.

We drove downtown in a painful silence. I could see Zane in my rearview mirror. There was a very unfamiliar look in his eyes, fear. He tried to read his new Magic Treehouse book and occasionally asked me questions about what to expect. Thanks to my having called the CC at work we were able to get back to a private room, far away from all the flu, with a bathroom just outside our door, with about a two minute wait. Everyone was wonderful, having been given a heads up by the big boss that we were coming. One of my favorite doctors was the attending in the ER. He's funny and calm, he made Zane smile, and calmed his nerves. Zane got a battery of tests, chest xray, multiple EKGs, and they sent off lots of labs when they placed on IV. Zane's heart stopped hurting within a few minutes of getting there. He was a trooper through everything. He was scared, but brave. We watched movies, read books, and somewhere in there Zane finally understood what I do for living. He was very impressed that I knew how to put his leads back on and said, "wow mom you are really paying attention to what they nurses are doing." "Zane this is literally what I do at work everyday." He was amazed.

Here he is with ECHO the owl. Echo is the mascot of The Pediatric Congenital Heart Defect Association. People take pictures of him in fun places, kind of like JB for heart patients. Echo arrived on Thursday, just in time for his first adventure, a trip to the ER. The first of many hospital trips I'm afraid.

 EKGs are old hat to him, but he stayed hooked up for hours this time, which was no fun. A few hours after getting there his chest started to hurt again and his heart rate was elevated. So we were hooked back up to the EKG again.

 All the testing was done rather quickly, then we had to wait for results and for the doctors to talk to each other. We snuggled on a tiny stretcher. Look at those sweet eyes.

After four hours in the ER they did manage to capture a few of his events on an EKG. He was having a few skipped beats here and there, throwing some PVCs, and had random episodes of tachycardia (increased heartrate when he was doing nothing.) His cardiologist happened to be on call and said we could wait and see if the events continue. If they do we will need to go in and have him wear a halter monitor to get a better view of what's causing them and when they are happening. They seem to be happening most with exercise, but he has come out of bed and said his chest hurts before too. Today I called the cardiologist office and was put on the waiting list for a halter monitor. I guess there aren't a lot of those available for pediatric patients. Now we wait to hear back from the nurse.

We walked out of the ER in the middle of the night and Zane said "is it raining?" Of course it's raining Zane, Grandpa wouldn't miss this. I tried to convince Zane we had been having a party all night, putting a happy spin on it. We went to bed around 1:30 am, but Zane was up, bright eyed and pushy tailed at 6:45, proving once and for all it doesn't matter what time he goes to sleep he will wake up at the same, early, time. The first thing I heard when I woke up was heavy, pouring rain, coming down on the roof. It's the closest thing I've had to a big bear hug from my dad since he died. It poured all day, Zane's guardian angel is legit! Zane stayed home from school and napped in the morning while I watched him sleep. I've never been so tired and yet so unable to fall asleep in my life. Every time I closed my eyes I just saw EKG strips. That's what happens after hours of watching your son's EKG monitor. Zane was sad that he couldn't go to school, he was missing his friends, so we braved the ice/snow to go eat lunch with his Godparents. I thought that would help lift his spirits.

He had a great time and he loves his Godparents.



Zane and I had wonderful day together. We went to Target where I would have literally bought him anything. I recently read an article by a heart mom about how she can't say no to her heart warrior whenever he asks for Legos. I really related to that Tuesday. He asked to get a magazine about Martin Luther King, Jr. sure son, anything you want. It was bad, I realize that, I will pull it together. We picked up his brothers and I muddled my way through the rest of the afternoon/evening. I held it together, I did not cry even though I felt like I could burst into tears at any moment. I kept it positive, we played, and I didn't ask him continually if his chest hurt (though he told me when it did).



I wish I could say that the day ended in this great success. Sadly, after he went to bed I went to the shower and had the breakdown that I had kept at bay all day. Of course Zane walks into the room at this point, crying, because he heard Zach say school was cancelled. He really wanted to go to school Wednesday to see his friends. So after all my hard work he witnessed my breakdown anyway. I went to bed feeling horrible and overwhelmed, which is my baseline state now I guess. Needless to say heart mom badges are not easily earned. First ER badge, check!





Rowan's 5th Birthday Week: Happy Birthday Rowan

Dear Sweet, Loving Rowan,

It's your birthday! Today is a big one, five years old. You've been waiting a long time for this big day to arrive. You have been dying to be old enough to go to kindergarten and now you are, hooray! I didn't think you were big enough go to kindergarten for the majority of this year, but over the past few months I can see it. I can see you getting on that bus and I can hear all your wild stories when you get home. You're big enough, you're so smart, you're brave, and you're oh so kind.

Last picture of you as a four year old!



You woke up bright and early today to open presents before Daddy went to work. In very exciting news Zane had a snow day today so he got to be home to celebrate with you all day long. You got all your favorite things for your birthday, Ninjago Legos, a Voltron Lion, footy pajamas, remote control car, Voltron mask, and my favorite the Sumo suits!

 Thatcher's face is priceless in this picture. He acted kind of like a referee because every time he walked into the room they had to stop and go to their corners.

 Rowan is so little he falls down, just like in a cartoon, every time. Zane is so big it's almost not fun since he never falls down, but he fell down for effect a few times.

 

I had promised you our yearly trip to the toy store for your birthday so this morning, before it started snowing/sleeting again, we braved the cold to go to Toys R Us. I was thinking you'd pick out another Lego, but you chose two little Rescue Wings action figures, from your new favorite show. We came home for movie time, instead of naps, then Daddy came home early to join in the fun with a big Lego for us to work on during these upcoming snow days.

 

Today you and Zane had lots of wrestling matching, you guys worked on Legos, read books, played in the snow, and played with baby T. This evening the Richards clan braved the snow and ice to come over and eat pizza with us. You and Everett had a few good wrestling matching, we sang, ate cake, and you got lots of well wishes from family. It was a great, calm, cold, wintery day, just like the day that you were born.



You might have been a little sleepy this afternoon, so you let me cuddle you. It was lovely!



I could not be more proud of the big kid you are becoming. This year there were lots of changes and I wasn't sure how you wouldn't handle them all. You started your fifth year with becoming a big brother. I could never have imagined what an amazing big brother you would be. Thatcher adores you and you love him even more. It's been a joy watching you and your brother love baby T. You've grown up so much, but luckily for me you've remained by little cuddly boy as well. I will so miss you when you're off at school, but I'm excited for all the new fun adventures this year will bring for you.
I love you big man!

Happy Birthday
Love
Mom

Rowan's 5th Birthday Week: These Are a Few of Your Favorite Things

1. Legos: Rowan's love of Legos amazes me because when Zane was five we tried to get him to like Legos and he just wasn't that into it. He wanted them as presents, but then would never actually do them. Rowan loves doing all his sets repeatedly, he needs no help putting them together. I am constantly amazed at this fine motor control as he puts the tiniest Legos imaginable together.



2. Voltron: This one cracks me up and confuses me all at the same time. From what I can gleam Voltron is an old super hero cartoon that has recently been remade, and I guess is now on Netflix. I wouldn't know anything about the show because I've never seen Rowan watch this and he's never asked me to help him find it. However, Everett has an awesome, huge Voltron toy that talks and has lions for legs/arms. He played with this all summer then requested one for Christmas. Again, much unlike his brother, he has played with this huge action figure for months now, taking it with him wherever we go, and requesting more Voltron toys for his birthday.

 

3. Hot Wheels: Rowan still has a great love of tiny cars, from the movie Cars and Hot Wheels. We probably have a hundred tiny cars around the house, but to his credit Rowan will play with them frequently. He organizes them, drives them around his room, puts them in his pocket. He's hysterical and loves little things. Little figurines, Lego guys, tiny books, tiny cars, the tinier the better. He usually has a car or a guy in his pocket at all times.

 

 





 

4. Baseball: Rowan definitely caught the baseball bug this year. He played his first season of T-ball this fall and he adored every minute of it. He was pretty good too! He loves to play catch with Zane and have hitting practice with Zach. He's eagerly awaiting his next season of baseball that should be starting soon.

 

 

 

5. Board/card games: His current favorite game is Apple to Apples picture addition, but he and Zane play all sorts of games together. Rowan also loves to play board games with Grandma, usually a classic Candy Land when she's here. He also is very good at puzzles though rarely remembers they exist without be reminding him.

 

6. Riding bikes and scooters: Rowan taught himself how to ride a bike without training wheels this year, which I'm still amazed by. Then Santa brought him a Razor scooter like Zane's and the two of them have great adventures riding around the neighborhood/lake.

 

 He learned on this tiny bike and has already had to move up to the next size.

On to his bigger bike in time for our Christmas light ride.

 

7. Adventures with Zane: Rowan's love for Zane reminds me a lot of my love for Able as a child. I would have followed Able over a cliff as a kid. He could, and did, convince me to do anything and it always seemed like a great idea when Able was telling me about it. That's how Rowan and Zane are the majority of the time. Sometimes they fight like cats and dogs, but for the most part they have great adventures on pirates ships, in forts, and in wonderful imaginary world I could never dream of.

 

 

 

8. His baby brother: This was by far his favorite thing this year. Rowan has thrived as a big brother. He loves baby T more than anything and Thatcher frequently acts as his security item when he's sad. If he's hurt or gets in trouble he needs baby T. As Thatcher has gotten older and become more fun to play with they have become better buddies. I think Ro will really miss T next year when he's at school and I know T will be lonely here without any brothers.

 

 

 

 

 

9. Watching things: This is a constant battle that I cannot stand, but he does love it so I'd be remise to not mention it. This has been a big change from last year when Rowan wasn't really interested in watching TV for any period of time. Fast forward to this year when he asks me repeatedly, all day, if he can watch something. Just FYI if he ever asks me the answer is no, there are times I will let him watch something on the tablet, but asking me drives me crazy. His current favorite shows are Fireman Sam, which I have to say I love, Rescue Wings (I have no idea if that's it's name) but it's a transformer type airplane show on Netflix, and all the Lego Movies.

 

10. Books: Rowan can read some words, probably enough to read some very simple beginner books. However, he spends a lot of time look at/through Zane's chapter books that he in no way could read any of, think Captain Underpants, Magic Treehouse books that don't even have a lot of pictures. I have suggested other books with more pictures and more words he could read, but he's not having it.

 

I think those are the highlights, the things you can find him doing everyday at five years old. He has great focus and a long attention span which still amazes me. He can and will play quietly by himself for long periods of time. He does miss his brother a lot when he's at school, but has learned to entertain himself well while he's away. He's dying to go to kindergarten so he can get on the bus with his brother in the morning. He's grown up so much this year and learned to love lots of new things. 













Rowan's 5th Birthday Week: 5 Year Old Interview

Rowan's 5th Birthday Week:  5yr Old Interview

1.How old will you be on your birthday? Five

2.Who is your best friend? Everett*

3.What is your favorite thing to do? Build Legos

4.What is your favorite color? Orange*

5.What is your favorite food? Broccoli*

6. What do you like to do with your family? Go to Everett's house

7.What is your favorite toy? Voltron

8.What do you want to be when you grow up? Cowboy*

9. What makes you happy? Thatcher

10.What makes you sad? People who say mean things

11.What is your favorite movie? Lego Ninjago 

12.What is your favorite book? Captain Underpants

13.Where is your favorite place to go? Otto's (a.k.a. Oklahoma Science Museum)

14.What do you like to do outside? Play baseball

15.What is your favorite animal? Frog

16.Who is your favorite person? Mamma*

17.What was your favorite present? Shark blanket (from his presents at his party)

18.What do you like to cuddle when you sleep? Blanket

19.Who is favorite Super Hero? Batman

20.What is your favorite song? The Night Begins to Shine ( a song from Teen Titans Go)

 

Bonus: The bonus is usually who do you want to come to your party, but since he has already had his party it doesn't really apply. Needless to say everyone he loves was at his party yesterday!

 

Answers with *beside them are the one with the same answers as last year.  

Rowan's 5th Birthday Week: Lego Party

Today was the day, the big Lego party. As I've mentioned before Lego's are not my favorite, but I have grown to enjoy them somewhat more while preparing for this party. We've spent a lot of time making our own Lego creations to use as decorations and I've had a great time coming up with stories and ideas of things to build with the boys. The decorations were pretty simple, nothing too crazy, but lots of fun.

Here is my crowing achievement, this Lego five with all sorts of flare. 

We had a few doors decorated as Legos, because we go all out and the Dollar Tree makes things so easy.

This week each boy used their Lego trays to create their own little scenes to be used as decoration. Here is Rowan's layout. It's a bunch of random things that he made separately and placed them on here with little to no thought or story. He worked hard on all of it, but there is no back story or overall theme to this lay out.

 

Contrast that with Zane's layout. Here's the story, this is a beach front business/party house. Inside they do work, upstairs they party. There is a volleyball court, swimming pool, and dance floor up top. Out front is the swimming area of the beach. There is a lifeguard on duty, surfers, and lots of swimmers (guys with their legs taken off so they look like they are in the water, I found this hilarious). The guy in front has on a lifejacket but only has one arm!!! There are police/safety guys on a four wheeler ready to rescue people and take them to the medivac helicopter that's parked up front. And yes you can slide down from the top of the party house into the ocean. I'd like to add that the dog house in the back was made by me and Zane begrudgingly let me put it in in his layout.





It was a long wait after church this morning until this afternoon's party. Zane had baseball practice so Rowan and I prepared everything, decorated, and cleaned up with  about hour to spare before it was party time. The wait nearly killed him, but finally the guests arrived and lots of fun was had by all.
I let my kids open their presents first if they want to for a few reasons, first of all I can't stand being asked fifteen time "when can I open my presents." Secondly there are usually presents that they would like to play with at the party, with their cousins. So present time was up first and did not disappoint.

 

Here we are, cuddling, watching the Olympics, waiting for the party to begin.

 Rowan wanted his birthday picture taken with a present. This one was from Aunt Trina, a Lego, which is the best gift ever because you immediately know what it is when you shake it. He could not wait to see what Lego was in there.

 Here's the whole crew watching Rowan opening presents. This was Yeti in Spaghetti, which is a fun new game Uncle Able and Aunt Kari got him.

 Grammie and Papa got him a shark blanket like Everett's, which he's wanted since Christmas. He also got Lego's from the Richards, a new game, monster trucks, a transformer, a  fancy YoYo (which Zach spent most of the evening trying to figure out), a book, sour patch kids, a sprite, and a real life rattlesnake rattle from Grandma B. All things he love and wanted and he still has presents from Zach and I to open on this birthday.

 The weathermen had said all week that today was going to be sunny and sixty five. Well, sadly it turned out to be cloudy, windy, and freezing cold. We made a quick trip outside for a Lego Pinata and a silly string fight before heading back inside to warm up.

 



Then dinner and cake time. Rowan requested a Lego cake with his Lego guys holding the candles (that didn't quite work out). These cakes look so simple, but turns out they were a HUGE pain to make and terribly messy. My OCD was not ok with how they weren't perfectly square, so to try to hide the fact they didn't quite look like Legos I decided to covered them with all the Lego guys. I mean why not, right? The most important guy, Rowan's absolute favorite, is Lloyd the Ninjago Ninja, pictured top left on the blue skate board. He got this tiny guy in a surprise $3 package, randomly, last week. He has lost and found this guy all over the house for the past week. I think Rowan would have been fine with just Lloyd but I found the wide range of guys very entertaining. Let me point out a few highlights, that is Harry Potter in front of the orange cake holding a fire extinguisher(LOL), a few constructions workers, all the Lego Ninjago guys, Spider Man, a Mind Craft guy, Luke Skywalker, Santa Clause, Captain America, and lots of other random guys.



 It was a great party, everyone had a blast with only minor meltdowns (none of them from the birthday boy). There were two adorable little babies toddling around here that I somehow managed to not take any pictures of, what?? Everyone went to bed with a belly ache and excited about doing lots of Lego's tomorrow. Thank you so much to everyone who showered our sweet boy with love today!