Ten on Tuesday

1. On Friday one of Zach's dreams, since we found out that we were having a boy, finally came true. We signed Zane up to play T-Ball. Zane is pretty excited, but Zach is unbelievably excited!!! So this weekend we headed out to drop way too much money on T-ball supplies, bat, glove, balls, bag, all sorts of fun things.

 The happy face following sign up!

Next Yadi

 Playing catch at last!!

 Zane working on his Albert Pujols high kick and swing.

 And of course Rowan had to get a little glove as well, making the father son fun that much better.

2. In other fun father son news, Zane was finally able to sit down and put together a Lego set with Zach. It wasn't anything big, just a small little truck, but Zane's attention span has greatly improved, he could put everything together, and was so proud of himself once he was all finished. Baby steps for the boy with no attention span. Rowan built with his Legos with a great attention span for a two year old, Zach thoroughly enjoyed it, and I took pictures!!

 Rowan's zoo

 Zane's little construction truck and worker man.

3. Saturday was Brendan's lazer tag birthday party, but Mom and I were in charge of the little kids. We took them to Otto's house, actually saw Otto, but Zane was randomly terrified. We had lots of fun including nature class and music class outside, lunch, and choo choos for the little kids!!

 Nature school

 Choo Choos

 Music class with Grandma

Itsy, bitsy, spider

4. In other very exciting news my little Ro baby gave up his binki this week. We had been kind of planning it and dreading it for a while now. But it turns out that things which unbelievably smoothly with little to no complaints or sadness/fits. We forgot to give him his binki one night and he didn't even care, amazing compared to Zane's 2.5hrs of screaming his first night without his pacifier. Hooray!!!

 

The celebrations included a new fire truck, Yogurtland frozen yogurt, and lots of Mommy cuddles!

5. Since I have been going to the gym in the morning on my days off we haven't got to meet Uncle Able for breakfast in a long time. So Friday we met up at his friend's restaurant for amazing breakfast followed by lots of fun, buying my new bedroom furniture!!!!!!!!!! Yes, that's right after 32 years of life and 8 years of marriage I finally have a head board, not to mention my beautiful side tables! I am still rocking my Target chest of drawers though, so maybe not really a grown up.

I have to get some classy lamps ASAP!

6. Today my nephew, and God son, turned eight. Eight is the age that whenever anyone asks me how old were you when such and such happened I always think I was eight. I am not sure why, but I remember it as a great age, I'm sure BW will love it. We had a little shin dig tonight, cake, ice cream, singing, presents, the whole nine yards. Here I am with the bday boy himself. One of the highlights of my week was when Abbey told me that after he fell and scrapped his knee, and she was bandaging it he said, "This would be a lot better if Aunt Audra were here." That's high praise from BW, melts my little heart. Love him, Happy Bday BW!

Doesn't he look one hundred percent eight, with his spiked up hair and serious face. Love it!

 Yep, I got him a Minecraft calendar,per his request!

7. After being outside all weekend in the beautiful, though very windy, weather both of my boys are now sick. Rowan has double ear infections and they both have a horrible cough. I'm not sure what that is all about, but it sounds terrible around here. They both have "an ear down" as dad would say. Rowan was very emo all day, which meant he actually would cuddle me, ever so briefly. It's the best part of a sick kid, especially when they never want to cuddle you. Here we are at the doctor where we had this conversation for thirty minutes, "I wanna go, I wanna go, I wanna go, car, I wanna go." "We can't go baby we have to see the doctor." "O-tay" Rinse repeat. He also found the hand sanitizer on my diaper bag and said "I drink it?"  Kids got real problems.

 So sad before he found the hand sanitizer.

8. Training for the race is coming along very slowly. I did get to run outside this weekend which was better, but I think emphasized my slowness even more somehow. I did injure myself during a dance party with my boys so I took a day off and then was home with sick boys today. Sure to have lost all my training by Friday. Took my first running selfie, because you have to. Zach also has started his training and his feeling the pain two days in.

9. Zach and I finally accomplished a date night. Turns out it was as simple as a text to my mom, not sure why we don't do that more often. Definitely picking a less depressing movie next time. There should not be tears on date night. We went and saw Selma, what with it being MLK weekend and all. I'll try to stay off my soap box, but I find it unbelievable how recently those horrific events took place, cannot wrap my head around it. However, I also have to say a lot of it seemed so painfully familiar to exactly what I've seen happening recently. We aren't that far removed from it. It breaks my heart. I cried every time the old man whose Grandson was shot for no reason, and who was horribly beaten himself, then finally got to register to vote, came on the screen. So I desperately try to be the change I want to see in the world and raise my children the same way! And be nice, be nice, be nice!!!!!!!!!!!!!!!!

10. Lastly Zach and I are anxiously awaiting the birth of Uncle Adams baby. Uncle Adam, is Zach's best friend and is going to be a father any day. I am so excited and have had so much fun watching Zach give Adam dad advice. It is all spot on of course, it will be so fun for them to get to be dads together. Adam, and his wife Rebecca, are expecting a little boy any day. We're sending prayers over to Arkansas for a safe delivery and a happy, healthy baby boy Kingree!!

Tales of a TET Baby: Rock Your Scar

After my immersion into the world of congenital heart defect awareness I learned that this week happened to be the #RockYourScar contest on Mended Little Hearts. Turns out I think I have to be on Facebook to actually enter the contest, and I have no desire to ever be on Facebook. However, I don't need to enter the contest to know who my favorite heart warrior, rocking his scar is.

Yesterday I told Zane about how there were going to be a lot of people taking pictures of their scar to show that they are proud to have them. When I said this his response was, "What is a scar?" I loved this response, because to me 'scar' seems like such an intense word with so many negative feelings associated with it. Zane has always called his scar his stripe. I'm not sure where or how this started, but it is how I always remember us referring to it. As I have mentioned many times Zane loves his stripe. He shows everyone he meets, with great pride, like it's his badge of honor, as it should be. Zane most definitely rocks his scar, everyday, in every way!

So even though we aren't officially a part of the contest here is my heart warrior, rocking his scar, most appropriately in his doctor's outfit.

 Borderline serious Zane, with his half fake smile.

 

Zane smiles with his whole face and loves with his whole, very special, heart! He is my heart warrior, the bravest little boy I know. He has no idea all that he has overcome and I'm so proud to be his heart mom!

 

 This most accurately sums up Zane's personality, silly, fun, crazy, little boy!

"Never be ashamed of  the scars life has left you with. A scar means the hurt is over, the wound is closed, you endured the pain, and God has healed you."

Tales of TET Baby: Heart Mom Club

When Zane was diagnosed we made a hard and fast rule at our house that there was to be absolutely no Googling of anything to do with TOF, TET babies, congenital heart defects, nothing at all. Google holds a wealth of knowledge, but with that comes horror stories, worst case scenarios, and all sorts of things that just aren't true. It's difficult to sort through all of this on a normal day, but impossible when we are in going through something terrible. When every night you are going over the worst case scenarios in your head, you don't need a computer screen to back all those things up. I was determined to live in the moment, dealing with whatever our scenario was, not all of the other terrible possibilities. I stand firmly behind this rule now and always advice parents of patients getting a new diagnosis to do the same.

I never Googled Tetrology of Fallot until about a year ago when I had a nursing student with me and I couldn't remember the fourth thing that was wrong with my son's heart. That in itself was truly unbelievable and made me strangely happy to have come so far. But I was trying to teach so I Googled it. Wow, the search results were horrifically frightening. Multiple surgeries, staying in the hospital for months, brain injuries from lack of oxygen, death, the whole gamete of terrible things that could, and have, happened to TET babies. I quickly shut all screens and went back to my never Googling TET policy.

Then this week, when I was posting things to Instagram with the hashtag tetbaby, I clicked on the hashtag, just to see what was there. And I was opened up to a whole new world that I am sad to say I had shut out. A world that wasn't trying to terrify you, but that was trying to bring support and hope to other families who had children with TOF and all sorts of other congenital heart defects. There were shirts and beautiful quotes raising awareness that congenital heart defects are the number one birth defect in the US. That every fifteen minutes a child is born with a CHD. Tons of pictures of survivors, heart warriors, as they are called. Heart mom t-shirts, heart mom poems, websites where parents can go for support, to connect with parents who have children with the same condition as their own.

I never looked into any of this out of complete fear of what I would find. I have always known that Zane's story is the absolute best case scenario. He was a rock star CICU patient. He had zero complications, he never turned blue, he isn't on any  medications, he never needed a feeding tube, he never got sick, and on most days we can pretend that his heart condition just doesn't exist. I think it's because of this that I never tried to find forums or some sort of CHD awareness sites to share our story on. I guess I felt like if I shared my story, of the perfect case scenario, I would feel like I was bragging or feel like a jerk when there are so many worse, horrible stories there. People who have lost children, people whose children have spent most of their life in the hospital. I guess I felt like my story just wasn't bad enough to share.

Turns out, after immersing myself in the CHD world for a day, I realized that our amazingly perfect case scenario is the one story that is never being told. I am confident that Zane is not the only child whose TET story played out this way, but that story isn't being told.  So I am now firmly and proudly a Heart Mom!!! I am a mother of a Heart Warrior, I've taken up the cause, and am ready to spread the word. The good news that though not all CHD stories end as well as ours, they can.

This doesn't mean I regret not Googling TOF while I was walking through our journey. I don't, I was coping the best I could, I know it was self preservation, and it worked for me. My advice would be Google Congenital Heart Defect support groups or websites. The one I found that I really enjoyed was Little Mended Hearts. This site offers a way for parents who have kids with CHD to connect with other heart parents. It shares resources, support groups, and knowledge that I know would be really helpful to other heart parents. I signed up as a heart mom, ready to lend support to anyone I might be able to help.

So now I'm a proud member of the Heart Mom club. This is a club no one really wants to be in, one that everyone would gladly give their membership card up in exchange for a healthy kid, but also one that we are all stronger for being a part of. My first act as a member of this club was to buy multiple CHD awareness shirts. But a close second was signing up for the Roar-N-Run virtual race. This race benefits Mended Little Hearts and is the best kind of race because you don't have to go to an actual event and you have the entire Congenital Heart Defect Awareness Week (Feb. 7-14) to finish your distance. I'm sure all my ELMS Foundation team members will be joining me in this event and I highly encourage everyone else to do the same. If you are already going to be running or walking, why not join in the fun and help raise awareness of CHDs and help a site that provides support to all my fellow Heart Moms!!! Leave a comment and let me know if you are going to be part of the fun. I'd be happy to hear about and thank you in advance!!!!!

**Stay tuned for Zane's #RockYourScar photo. The contest goes on all week, though I don't know that I can officially enter since I refuse to join facebook, but God knows Zane rocks his scar everyday!!

Ten on Tuesday

1. All of our Christmas celebrations are finally over. We spent a wonderful weekend at the farm celebrating Christmas with the Blakley family. It was lots of fun and lots of food. We had a roasted goose, which was surprisingly delicious. As well as beef Wellington that I don't think I could fully appreciate since I don't really like mushrooms.

 Kari made two different, beautiful, fruity jello molds.

 Oh did I mention the figgy pudding, that is it on the left. It was amazing. I completely understand why they won't go until they get some. Ro loved it as well.

 Zach enjoying the goose leg.

2. Everyone got/gave wonderful gifts. Zane got some more doctor tools to go with his doctor outfit. He also got a science kit which is perfect for "doing science" as Zane calls it. Rowan got a dog guitar, new choo choo jammies (his favorite) and an awesome coloring pad that only involves water not actually markers so he doesn't make a huge mess. I loved all my gifts as well, all things I really wanted. It was lovely!

This face is too much.

 Doing some science with Uncle Brent

3. It was freezing cold outside, which really takes a lot away from the farm, where most of the fun is outdoors. But we braved the elements a few time for adventures. The ELMS Foundation running team went on a freezing cold jog and the kids took a few quick trips outside for exploring as well. 

 Zane rocking dad's favorite OSU stocking cap.

 Maggie found some icicles to eat while we were outside.

 Batman E!

 Of course we had to come in and warm up with some hot chocolate out of Grandma Dotter's Santa mugs.

4. Rowan and Everett's relationship continues to evolve and I see glimpses of them being friends. Usually they are just in the same space, but they did love riding horses together this trip. It was so adorable, I can't wait for them to be best buds.

 

5. On Sunday morning Rowan helped Grandma make biscuits. He was very good at the cutting out part and got thoroughly dirty in the process. There was a bit of a meltdown when we had to take off the Choo Choo jammies, no worries Grandma had another pair.

6. Now that Zane has a doctor bag full of toys we have spent a lot of time playing doctor at our house. I spent, I'm pretty sure, my entire childhood upstairs in my hospital, tending to all my stuffed animal's needs, doing surgery, making my rounds. So you can imagine how much I love watching Zane play doctor. Some of my patients have made the circle back around to be Zane's. Of course Rowan is a great patient as well.

Zane's specialty is heart surgery, obviously. "Rowan you want to have heart surgery like me?"

 This is Colored Bear, one of my former patients. He has a stripe just like Zane, where his two colors meet.

7. Today was the big day, Zane's cardiology appointment day! We had a lot of conversations about what was going to happen, what his jobs were going to be, and exactly what he could expect to happen at his appointment. And in great news he did AMAZINGLY well. There were no tears, no fits, no hiding behind mom and not talking to people. He was such a big, brave, boy. I could not have been more happy and proud of him.

 First up breakfast with mommy and daddy,

 then he rocked the waiting room, almost falling asleep on this little couch. He is such an old pro, I couldn't believe it.

 Ready to show off his stripe. He talked to the doctor like a big boy and held perfectly still for everything!!

 Once he was done with everything it was time for Mommy and Zane's day of fun. There was a trip to the toy store, lunch out, Big Hero 6 in the theater, and then a trip to the Disney store. Turns out the Disney store at the mall is closing and had some wonderful sales.

8. The news from the doctor was that all looks pretty much the same. His pulmonary artery valve still doesn't function, but he seems to be doing fine so far. We talked about the need for an MRI in a few years and of course the fact that he will eventually need a valve replacement. My favorite line was when Zane was spinning around the room, while the doctor was talking, and the doctor said, "So energy level doesn't seem to be a problem, possibly excessive energy." Yes, excessive energy for sure! I know that at some point this appointment isn't going to end with no news, I'm terrified of it, but today went well.

9. My favorite part of Zane and I's days of fun is always the point when Zane says, "Can we go get Rowan now, I miss him?" So adorable. I can't wait until Rowan has to go to the dentist or something so we can have a day of fun together. Or I guess at some point Zane will be in school and every day will be Mommy and Rowan's day of fun. Sad face!

10. Once we picked up Rowan we came home to do a little bit more science. What I have realized from our science kit is that it doesn't need to be a new experiment every time, it really just needs to be baking soda and vinegar over and over again. Rowan and Zane both loved it. It was a huge mess, but nothing can really beat your son saying, "But Mamma, I just really need to do science, I love science." Oh his Grandfather would be so proud!!

 And then Zane helped Rowan find all the woof woofs in the house and line them up by Ro's bed. Rowan was beyond excited and petted, fed, and cuddled them all for quite some time.