Tales of a TET Baby: Wise Words From My Heart Warrior

Today is my least favorite day of the year. It's Zane's cardiology appointment day. In good news currently it is seriously just one day a year where the realities of his condition and all that lies ahead have to be discussed. In even better news, after years of making this day a "special day" for Zane, the idea has stuck and it has become his favorite day of the year. He's been asking me when his heart doctor day is for months. Frankly I would have forgotten to make the appointment if it wasn't for his pure excitement about it.

This joy about heart doctor day is in no way an accident. For the past five years the day he went to the cardiologist was a full day of Zane and Mommy fun, after the minor detail of getting and EKG and echo in the morning, and causing his mother and father's PTSD to flair up. In St. Louis Zane and I usually spent the afternoon with friends going across the street to the zoo to see the penguins or to the Science Center to explore. Here the tradition for the past three years has been breakfast in the morning at Panera Bread (which is across the street from his doctor) and the actual doctor's appointment with Dad. This was followed by picking something out at the Toy Store for being so good (a hold over from the days of having to hard bribe him to sit remotely still during the echo portion of the doctor's appointment), lunch with me and whoever else we could get to join us, and a movie in the afternoon, all without Rowan. So still a big day of fun! It was a lot of work, mainly to get him to behave and not freak completely out with all the tests, but also a great day to celebrate his little life and help him to not be scared or dread going to the doctor. All the hard work has paid off!

This year he's in school so I made the earliest appointment with plans of getting him to school as soon as possible afterwards. For days he's been anxiously counting down until heart doctor day. When he got strep over the weekend I got very concerned we might have to reschedule for him or I being sick, which would have been devastating, thank God all was well today and we could all go. Yesterday, while home sick from school, he asked what the schedule of events for today was. So I said, "Oh we're just going to the doctor really quick then taking you back to school." Boy was I put in my place fast, "Mom, my heart doctor day is special, remember??? First we go to breakfast AS A FAMILY, at the white mac and cheese place across the street from the doctor (Panera Bread). Then I get an arm hug (blood pressure), the Christmas tree stickers (EKG), and  the magic wand (Echo). Then the doctor talks to us and then you and I go to the Toy Store to get a toy for how good I have been. Remember!!!! I use to get to go to the movies, but now I have to go to school." What an amazing memory you have  my son.

We were up early today for our eight a.m. appointment so we could have breakfast, as a family, before his doctor's appointment. This year was the first year that Rowan got to come as well. Zane was very excited to show him all the things he gets to do for his heart. I've loved listening to his explanations of what actually was/is wrong with his heart and how it was fixed. Rowan was wide eyed most of the time, watching very carefully has people put stickers and goo on his brother's chest. Zane reassured him that nothing was hurting him and that he was fine. Rowan also made sure everyone was aware that he too was a big brother, so not little anymore.

As for the appointment it was the first year there has been any slight variation in what the doctor has told us, either here or in St. Louis, about where we are with his condition. Usually they ask the hilarious questions about his energy level, "is he able to keep up with the other kids, does he complain of fatigue or chest pain" all that good stuff. Which is always met with lots of chuckles from Zach and I. Then they tell us that nothing really has changed, to not restrict his activity, and remind us, again (as though there is ANYWAY we could possibly forget) that he will eventually need a valve replacement. Up until today the doctors usually said "when he is a teenager" he'll need a valve replacement. Today the doctor talked about the need for further testing, specifically an MRI, to get a more accurate measurement of his heart, specifically his right ventricle which is what has to work harder since his pulmonary artery valve doesn't work at all. I knew this was how they got more accurate size measurements of the heart, I'm not sure I knew that he would have multiple MRIs. I always thought he would just need one prior to his surgery. However, today the doctor explained he would need one at some point over the next year, to set a baseline measurement of where we are at currently with his heart size, then he would need them periodically for the next few years, and the kicker "but he will probably need a valve replacement sometime BEFORE he is a teenager."

So yeah this is the first change in care routine we've had since going to one year appointments post operatively. It's not a huge deal right now, obviously none of it can be surprising to us, since we have known since the day of his surgery that another surgery was in our future. I did ask if him being huge for his age (both in weight and height) would cause him to need a valve sooner. The doctor didn't seem to think so, more just a matter of time, and how hard the heart has to work. Which to me the bigger you are the harder your heart has to work, so it only makes sense that him weighing seventy six pounds at six years old would speed things up, but who knows. As always the doctor reinforced that there is no need to restrict his activity now and that they will want to replace that valve before he has any symptoms from the right ventricle getting larger. So we won't see any changes in Zane before we're told it's time for surgery.

This news set me back on my heels just a bit. Again, I can't say I'm surprised, I know how this will play out. But an MRI is a bigger deal in children, they have to be sedated for it, which some kids react terribly too, some kids aren't bothered by it at all, but it's another step that can be quite frightening to a child. It is just a sign, and a wake up call, that the surgery is probably much closer than we've been telling ourselves for years. Picturing a sixteen year old boy getting open heart surgery is slightly different than say a ten or eleven year old. With this shortened time frame the possibilities of the valve replacement being able to be done in the cardiac cath lab, verses by an open heart procedure, are also highly decrease.

After the appointment I told Zane we could run into target and get him a Lego set, because I'm mother of the year and why not. On the way there I was teary eyed, thinking about all that lies ahead, dreading all he'll have to go through, and frankly being terrified of the possibility of loosing my sweet boy. Zane asked what was wrong and I, very honestly, told him I was sad that he's going to have to have another surgery someday, and I'm scared about it. His response sums up why I love Zane so much and again truly put me in my place. "Mom, you gotta just move on with your life. I'm not having surgery today. I'm fine, it will be fine, just move on with your life!" That was just the jarring words of wisdom I needed, provided to me by the six year old, who will have to live through all that I dread. And yet another AMAZING reason why I do not work with adults. Kids live today. They enjoy today or they are miserable and in pain today. But it literally just today. That's their only line of sight. They don't think five or ten years in the future because that's as long or longer than they've been alive. They deal with what they are handed in that exact moment, good or bad, with all of their hearts. They live their lives, with no worry about what's to come.

So I am trying to live right now and enjoy right now and not spend the next how ever many years in a constant state of fear, worry, and sadness. Definitely living in the moment, trying to soak up every instant with my children because tomorrow isn't promised for any of us. I am trying to let myself be ok with that and not just feel like I'm in a horrible state of denial all the time. I am really not, I do not deny what is going to happen and what all we're going to have to go through, I just can't live there and dwell in it. I have to move on with my life, as my wise heart warrior suggested!! I love him so much and have no idea how I got so incredibly blessed to be chosen as his mommy!

Oh So Loved and A Little Nervous!

One thing that I always hear from people, when they learn that I am a boy mom, is "boys will always love their Mama." I hope this is true, but this statement usually makes me cringe at the thought of having three teenage boys and how much they won't be loving me during those years. I fear the days ahead with a house full of stinky boys who want NOTHING to do with me. However, in good news those years are still pretty far away so I'm trying to savor all the amazing days filled of little boy cuddles right now.

Yesterday was a day when no one could get enough Mommy cuddles. This was mostly due to the fact that Zane was under the weather. He's been fighting a allergies/cough for a week or so, with on and off headaches. A headache is Zane's only symptom for EVERYTHING that might be wrong with him, but yesterday he also spiked a fever and stopped moving which are his other two big tells. I had taken him to his pediatrician last Friday after he came home from school with a headache. All his swabs were negative and his ears looked great. The doctor looked at me like I was idiot, and we head home. This morning, while I was at work, the boys spent almost three hours at the weekend clinic ($$$) and found out he now has strep and ear infections. Not good for poor Zane or his pregnant Mamma who might legit die/have a baby if I get strep.

No one ever wants to see their baby sick, but the only time I really get to cuddle my huge, seventy five pound, six year old is when he's sick. Rowan cuddles me when Zane is at school, but usually when Zane's home they are off playing together and I'm mostly ignored. However, when Zane was sick and not wanting to play, of course Rowan then needed more cuddles as well. Baby Thatcher also helped get me some attention, since both boys need to cuddle and talk to their baby brother all the time. Often forgetting to talk to or cuddle me in the process, just check in with Thatcher.

This led to a day of everyone adoring Mommy and needing lots and lots of my attention yesterday. We watched The Lion King, after it became clear that Rowan didn't know any of the songs and I don't think had ever watched it (mom fail, and not acceptable). We took long naps, then back to the couch for more pats and cuddles!! Sadly in the evening I had to go watch B in the State Championship swim meet. Rowan wanted to come, which left Zane home sick with Daddy (who, I reminded them frequently yesterday, loves them as much as I do, but they weren't believing it.) Zane was devastated and cried big puppy dog tears when I left (Mom I just miss you sooo much!). Be still my heart.

Once I returned, back to the couch I went with a boy under each arm, and lots of pats all around. As I sat there surrounded by my sweet boys, all I could think was, "where will I put the other boy?" Neither big boy seemed excited about scooting over or making room for baby brother in between us yesterday. Which then led me to the bigger fear that my sweet, loving, oh say happy boys will loose their minds once baby brother arrives and the wonderful equilibrium we've finally reached at our house will be shattered. I tell myself they will get tired of baby brother really quickly, since babies are in reality very boring, and then just go play with each other. There is a possibility of this happening, but probably a greater possibility of little Rowan melting into a pile of emotions when he can't be the center of my attention, 100% of the time. Or they will both melt into a puddle of emotions, and God knows I'll be a puddle of emotions, then we'll be in a mell of a hess, as they say.

It took us so long to get to the place that everyone is somewhat pulled together. Everyone is happy, potty trained, not having huge meltdowns everyday, getting along with each other, sleeping well, and borderline normal human beings. You can't help but cringe at the thought of exploding all that, yet again. I'm proud of what wonderful little people they have become. They are polite and kind, make friends easily, and are my constant helpers. They have learned to play together well, without killing each other. They can take care of themselves, for the most part, so now I just get to shower them with love and attention, not constantly  have to help keep them alive, it's just lovely!

 They are both old enough to understand what's happening, and have each other, so theoretically they should handle everything well. However, Zach and I are older now too, and are sure not handle sleep deprivation nearly as well as we did almost seven years ago. And we've never had to manage three children, which is sure to be different and challenging in it's own way. So lots of prayers for a calm little man, who miraculously is a great sleeper. And of course prayers for my sweet boys, that I'm not ruining their happy little lives, where they can currently, for a few more weeks at least, cuddle their mommy until their little hearts content.

Rowan's 4th Birthday Week: These Are a Few Of Your Favorite Things

1. Unequivocally SKINNY JEANS! I am not exactly sure when this obsession started, I think last fall when the skinny  jeans were the only kind of pants that would stay up, but somewhere in there he became OBESSED with them. I tried to fight it, but eventually got tired of washing his one pair of jeans every single day and bought him a couple more pair, then Santa brought some, so now he's all skinny jeans, all the time. The biggest punishment in Rowan's life currently is the loss of skinny jean privileges. He then tries to wear his tight pjs all day or might settle for his skinny slacks if he absolutely has to leave the house. It's so random, so funny, and his tiny little legs are so cute.

2. Closely followed by everything else fancy. This includes fancy shirts, hats, ties, bow ties, suit coats, you name it. He got three new pearl snaps for his birthday, which are really fancy, and he rarely wears any shirts that aren't button up or his fancy sweaters. He does have normal tshirts, but only wears them under protest. He request new fancy ties for his birthday and tries to wear the 24 month suit coat from his closet a lot. I'm thinking he'll probably need a new suit for Easter this year.

3. Big boy bike: Santa brought him this "big boy bike" (which in reality is the tiniest thing ever) for Christmas and he loves it. There are obviously still training wheels on it but he can go much faster on it than on his previous tricycle. Sometimes this involves falling off and scraping his face up, but he doesn't seem to mind. The new neighborhood is great for bike riding, there is cult sac and we are very close to the lake which has a bike trail all the way around it.

4. All things cowboy: He loves to ride horses, play cowboy, dress up as a cowboy, and of course rocks his cowboy boots ever day with his fancy clothes. He got lots of cowboy stuff for his birthday which helps with this obsession.

5. Building/working: Rowan "goes to work" pretty much everyday. Over the course of the year he's gone from being a straight "worker guy" to thinking he owned workers (leading to long conversations about how you can't own people), to now having worker guys that work for him, legally! He is in charge coordinating multiple imaginary building project around the house and in the yard. He does often jump in and help build or work, but is always very clear that he's the boss and is in charge of the worker guys (just like Daddy). His tool set is large and he uses most all of his tools everyday. The kid has a great work ethic, I'll give you that.

6. Studying: This is a new phenomenon and his hysterical. He loves to sit and look at/highlight in Zach's old electrical Engineering books. He highlights letters he knows, sometimes, but often he just randomly flips through pages, "studying." He's very serious about it and does this pretty much everyday.

7. Lightening McQueen: Rowan rediscovered this movie shortly before Christmas and now requests to watch some of it everyday. He got a lot of the cars for Christmas and now has almost all the main characters. He sets them up and drives them around all the time, never mixing them with his common Hotwheels. These are bigger and more special. My favorite part of this being one of his favorite things is when he says "Peed, I am Peed!" as in speed, I am Speed, without the S, hysterical.

8. Hotwheels: This started from Hotwheels being a very cheep thing I could get him when we were out shopping, truthfully has bribe most of the time. Then he started collecting them in earnest, got his Hotwheels suitcase and the rest is history. Everett also has lots of Hotwheels and they exchange them frequently when they are at each other's houses. Ro loves organize them, race with them, carry them around all day, and now play with his new race track thanks to the Richard's clan. At any given time I have at least three to six Hotwheel in my purse at anytime. Classic boy mom problem.

9. Legos: As of late Rowan has started to really enjoying building with little Legos and has even mastered a few Lego Junior kits by himself. He definitely has the patience and fine motor skills for it. Of course the fact that Zane will do it with him makes it that much better.

10. Puzzles: Unlike his big brother, Rowan has the patience to sit and do a puzzle over and over. He's good at them and enjoys doing the same puzzle multiple times. I love his focus and appreciate that he really just needs one puzzle to keep him entertained.

11.Lastly, but not least, any and everything you can do with your big brother. Playing with Zane is Rowan's greatest joy. They go on all sorts of adventures together and remain best friend and constant playmates. I love watching them work/play together.

Bonus: He also really loves to cuddle him Mamma!

Rowan's 4th Birthday Week: 4 Year Old Interview

Rowan's 4rd Birthday Week: 4yr Old Interview

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

2.Who is your best friend? Everett

3.What is your favorite thing to do? Build

4.What is your favorite color? Orange (he owns ZERO orange clothes)

5.What is your favorite food? Broccoli

6. What do you like to do with your family? Play with Mamma

7.What is your favorite toy? Mario (new little guy he received today)

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

9. What makes you happy? My Birthday

10.What makes you sad? Snakes

11.What is your favorite movie? Lightening McQueen

12.What is your favorite book? Bob the Builder

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 in our tower

15.What is your favorite animal? Elephant

16.Who is your favorite person? Mamma

17.What was your favorite present? Cowboy things (vague, but true)

18.What do you like to cuddle when you sleep? Birda (a random dog)

19.Who is favorite Super Hero? Everett

20.What is your favorite song? Everything is Awesome from Lego Movie 

 Bonus Questions:

Who do you want to come to your birthday party? Everett (that's it!)

Rowan's 4th Birthday Week: Happy Birthday Rowan!

Dear Rowan,

Today, after a weekend full of celebrating, it was actually your birthday!!! At long last you were four years old. You've been waiting, sometimes not so patiently, to be four. To you four meant you were officially a big kid, all grown up, independent, and ready to be a big brother. I am pretty sure you thought magic would happen today, making you fully grown and giving you all the privileges of an adult, you were sadly disappointed when nothing too spectacular happened today. You did get to wake up and open presents before Daddy left, so that's something.

The weekend was your party and all kinds of celebrations. It was a four day weekend with Bobo, no better present for you than four whole days playing with your big brother. Your Aunts, Uncles, and Grandma were all together on Sunday to celebrate your sweet life, with a blow out cowboy birthday. You had easy requests, like cupcakes with cowboy toppers, and frozen corn on the cobb. You're day was made complete with an afternoon full of playing with your cousins! Everyone was decked out in their best cowboy attire, just for you! Monday Zane and your cousins were out of school and Grandma was pack from vacation so we went on an adventure to the Osteology museum. You're best buddy Everett was there and it was quite the special treat!

 My last picture of me and my little three year old Rowan!

Me and my three boys!

Today Zane went back to school and everyone except me went back to work. So it was just you and me today, yet again. You were sorely disappointed. There was no one to eat lunch with or play with.  I took you to the toy store to pick out your present. Out of the entire Toys R Us you picked out the cheapest little tool box, full of tools you already had, but you thought it would help you carry your tools around the house. You also really wanted to buy Zane Legos so he would have something new to play with this evening as well. You're such a sweet boy, always thinking about making other people happy. Before the toy store you picked out some new clothes at Target, that I just could not resist. You're birthday outfit was already very fancy, with your new bow ties and suspender (both of which you had requested). You're little style is too cute for me, I can hardly handle it.

 I tried to buy you some plan colored shirts to go with all your new bow ties, but you quickly informed me that were not "fancy enough" and you wouldn't wear them. So we went with a hat and a suit coat instead. You have a very strong vision for your own little style.

I took you to lunch and we shared a burrito bowl. You thanked me for your presents all day. "Thank you Mamma for my presents, I love them." "I love you mamma, thank you for my presents." You told me probably seven times today, with lots of hugs and kisses, from my very big boy. You took a huge nap, followed by wonderful cuddles. I soaked up every minute with my fancy boy, knowing all too well that the days of just you and me are numbered, and quickly coming to a close, as we await baby Thatcher's arrival.

Luckily Everett showed up after he got out of school and you guys played all afternoon and evening. You showed him all your new toys and you had lots of fun with your best buddy. We sang happy birthday to you again, with left over cupcakes and cookies you'd picked out this morning. I think you had a great birthday!

This year has been a wonderful year for you Rowan. You've grown so much, learned so many new things, and have become your very own independent little man. You have your own thoughts and opinions on everything. You're patient and kind and growing up so fast. You're little spirit, smile, and laugh lights up every single day. I've loved these past few months with just you and I. We've cuddled for hours, read lots of books, worked on your letters, gone for walks, and you've been my constant companion on all the errands I had to run. I am so glad God choose me to be your mommy. You make life more fun and you're such a blessing to our family. I love you so much and can't wait to see you flourish in your new role as a big brother. My prayers for you this year are that you remember you're always my little boy, even when you aren't the smallest anymore. That you never stop asking for cuddles, and that you stay sweet and kind through all the changes that are about to come.

Happy Birthday Sweet Boy!!!
Love

Mommy

Rowan's 4th Birthday Week: A Year in Pictures

February 2016

March 2016

 Probably could have used a second set of stitches in March, but couldn't go back after his first round in December.

 His fanciness begins!

April 2016

This was our spring, lots of time playing with Zane, hanging out at the ball fields, and riding bikes!

May 2016

Learning letter and working on school started in earnest last spring. We've slowly made our way through the alphabet over this past year. He's a very quick little learner.

 There is always lots of Rowan cuddles, they are the best.

 One of the highlights of Rowan's short life was riding horses at farm camp. This summer

June 2016

 This was the start of his fancy shirt craze. This is the fanciest of all the shirts and was worn constantly over the summer.

 The cutest Dobi the world ever did see.

July 2016

During spring baseball we learned that Rowan loves a good chair and he loves kicking back and relaxing in it. This is his brother's Ninja turtle chair, he'd much prefer his Lighting McQueen chair for chilling. Also, check out his amazing tan!

 Rowan and Everett are best buddies and partners in crime.

 A big milestone this summer was Rowan petting Shy Shy without screaming!

August 2016

 Final days with Bobo at home before school started.

 With summer came fancy short requests. Here is August's outfit of the month, quite possibly a blog series I'll be starting this year with Rowan's clothing choices. Love him!

September 2016

Justin chilling at the lake while brother swims.

 Walks to the bus stop became a daily routine and Rowan was always styling.

 September also came with a couple weekends without Daddy or Zane, which were a struggle, but Rowan and I became best friends and had our own adventures.

October

With fall came his love of skinny jeans. It was out of necessity originally, because any bigger ones would fall off, but grew to be quite the obsession. Here is October's outfit of the month, all styled by him of course.

 He learned to jump hay bales this year, a big accomplishment for any farm boy.

 And of course the biggest news, he learned he was going to be a big brother, well he already is, just ask him.

November 2016

In the fall his face began to change again, much bigger boy face now.

 Matching facial bruises, par for the course at our house.

 As we made our way into the fall Rowan began to adjust to his brother being gone and got braver each day.

 But sadly there was still a lot of tears missing his Bobo.

December 2016

There are too many outfits to choose from in December, but the first one is probably my favorite.

 So much love!

 He got his newest, favorite fancy shirt from Christmas, and new cowboy boots, not to mention a big boy bike. His life is complete.

January 2017

Horse Rides,

Track loader rides,

 and the highlight, meeting baby Alice!

 And here is January's outfit of the month, with his new black Nikes.

February 2017

Another blog series idea could be Rowan's facial injuries. February started with this beauty followed by a random lip wound he acquired during the night.

February brought move number four for Rowan. I can't believe all the places he's lived in his short life, but he has adjusted well. Here he is the first night in his big boy bed/bunk bed!

Rowan's fourth year ended with his big cowboy birthday party!