A Friendly Reminder

I know that the world we live in can be a really harsh, cruel place. At a time where it seems like all you read about is the bad in the world and people doing nothing but hurt one another, I just wanted to remind you that there are infact some pretty amazing people in the world. I was reminded of this when I checked the mail today.

This small package addressed to Jack was bound to the rest of the mail with a  rubber band.

Since we are in full Christmas swing here, I didn't think much of it, assuming it was just a little early Christmas gift. So I opened it to find this:

It was a cool Superman wallet with a note that reads "Hi Jack aka Superman. I found your wallet. Also-- I may have missed your birthday. I hope you had a good one." The wallet and note alone were amazing enough.. then I opened the wallet to find this:

Jack's mystery cheerleader strikes again!! If you don't know what I'm talking about, someone has been randomly sending Jack superman themed cards with encouraging words and money in them. I don't know who this person is. I don't know if I know them.. or if they are a friend of a friend of a friend. All I know is they think of my precious boy and send him these incredibly thoughtful, encouraging words and these incredibly generous gifts. Despite my pleas for them to come forward so I can thank them, they choose to remain anonymous. At Christmas time when they could spend this money on a million other things, they choose to send it here to Jack. My favorite thing about all of this is that this amazing person has no agenda-- they do this incredible act of kindness just to do it. If leaves me speechless every time... so if you're reading this, Jack's mystery cheerleader, 2 things... You didn't miss Jack's birthday. And more importantly, thank you. From the bottom of our hearts. 

(but really I can't tell you how crazy it is driving me that I can't figure out who you are!!!)

When It Looks the Same

I typically blog from my phone, which is so incredibly convenient because A) the app was so quick and simple to post from B) my pictures are all on my phone and it took 2 seconds to put them on a post and C) my MacBook is ancient and I have to start it up a day in advance if I want to use it. Unfortunately, the blogger app has been down and there's no end in sight so I'm at the mercy of my laptop for the time being. Long story short, sorry for the delay. Here we go.

Jack had a cardiology appointment at BCH on October 14th. We loaded the kids (and grandrea) in the car and headed into town.
      

We got breakfast, gigantic coffees and got settled in for a long morning/afternoon at the cardiology clinic.
       
        mmm... chocolate muffin.                                who needs socks?

We got called in to get our blue hospital bracelet (that he refuses to wear) and get weighed in and measured. As soon as we walk into the tiny room, Jack starts to cry. I swear, he has PTSD and he knows why we are here. It breaks my heart every. single. time. Jeremy heard him from the waiting room so he ran in to help. We stripped his little body down and the nurse managed to get his height and weight. I have no recollection as to what his numbers were... all I could see were the tears on his cheeks and the fear in his eyes. My mind was thinking "Baby, you've been through so much worse" but my mother's heart was saying "I know, baby. I know.. I'm here"

As soon as he was done, I scooped him up the threw his johnny on (he looks so cute in those little things!) and it was back to the waiting room for... you guessed it. More waiting.
        
Big hugs for all of his supporters!


Playing with "Meemaw" (his new name for grandrea) and Pluto

   
Evie always comes prepared with lots of friends to play with.

Next up, we headed in for the EKG. This is usually the easiest part. He loves stickers and he basically just gets covered in stickers. The poor little guy melted down as soon as we started getting stickered up. With most kids, you'd probably think to offer them Elmo videos or Mickey Mouse to soothe or distract them. Not my boy. I asked him if he wanted Sia and the tears immediately stopped. The nurse got a good chuckle out of that one. We made it through the EKG with flying colors and headed back to the waiting room... for more waiting.
     
Hugs and kisses for the little patient and his mama

At this point Evie was getting a little bored.. so thankfully Grandrea was there to whisk her away and have a little adventure exploring the Hospital. They played on the magical stairs and even found a stage where Evie was more than happy to perform The Evie Show for Grander and a Hospital worker.
       
She hates performing, can you tell?

While Mom and Evie kept each other entertained we got called in for his echo. I was absolutely DREADING this part because he is suppose to lay still while they take pictures of his heart. This always takes FOREVER and if you've met Jack, you know sitting still for even a short amount of time is a struggle. As soon as we walked into the dim room with the blinking machines, Jack tensed, grabbed my shoulder and started crying for his sissy (Evie). It was the sweetest, most heartbreaking part of my day.. to hear the love he has for his sibling but the fear he must have been feeling. The technician was so calm and kind. She told me I could lay next to him to try to keep him calm.. so we put Sesame Street on the TV monitor next to the bed, took a deep breath and got started. He was a little squirmy and upset at first.. But I just kept talking to him. I kept saying any silly little thing I could that popped into my head. I don't remember a single thing I actually said.. my only goal was to keep his mind off of what we were doing and kept his attention on me. And he did AMAZING. It was probably the easiest echo we've ever had.. minus the sedated one.. and the one he slept through on his own.
   
Pictures of Jack's precious little heart. And a boy and his mama.

Then it was back to the waiting room... for more waiting.
   
Checking his email.. just kidding, he's listening to Sia again.

She was just acting how we were all feeling at this point.

Finally, the last leg of our appointment was meeting with Dr. Tworetsky, Jack's amazingly talented cardiologist. This man has known my son since before he was born. When you have a child with such a rare, complex health issue it's difficult to let go and feel trust for anyone taking care of him-- even when they are the most educated doctors and nurses. I trust this man with my sons heart.. essentially trusting him with my sons life. It's an incredibly heavy thing to think about.

So Dr. T finally came in and said as far as his echo goes, everything looks the same. In Jack's case, this is a good thing. His leaky valve is still leaking but it's leaking about the same. It's not enough of a concern to have to rip him open just to fix that one leaky valve, so Dr. T assured us that it's something that we can just wait for his next surgery (The Fontan) to fix-- assuming it stays the same until then. He was happy with Jack's o2 sats, with his growth and color. He said he looks great and told us to just take him home, love him, feed him and come back in 6 months!
      
Thankfully, both Jack's AND Soxy cat's hearts both sound good.


Big smiles for a successful appointment!

Basically, we go back in April for a check up and the next appointment after that will probably be to talk about a cath lab to get ready for the Fontan. All we can do is celebrate the positive and good that came out of this last appointment.. and try to push the worries for the next operation away for now. I'm a firm believer in trying not to worry about anything until you absolutely have something to worry about. In this case, it's a little difficult not to worry. But we'll just do what Dr. Tworetsky told us to do... feed him and love him. Until next time, BCH!

 
Not even out of the BCH parking garage.

A Sobering Statistic

Last week Jack had his annual review with EI. He did amazing and didn't qualify to continue services with his scores.. However he does qualify on his diagnosis alone. I had to rummage through old paperwork from Children's so I could give them his specific diagnosis (or the laundry list of defects as I like to call it). I found a discharge paper and handed it over for them to take away and make a copy. After everyone left, I flipped through all the old papers and came across the notes a nurse wrote for us during our meeting we got his definitive diagnosis. And I came across this number..

It says the odds of Jack surviving long enough to graduate high school are 50/50. Without any other findings. Any other complications. 

I took the papers and pushed them as far across the counter as I could. We've been coasting for so long, it feels like Jack is just a healthy, typical little guy. Then things like this bring us back.. Remind us and keep us grounded. 

I hate that I have to read things like this. It makes me feel incredibly fearful for my sons life. What the fear does to my own heart and mind is indescribable. Alas we push on and just keep living. What other choice do we have?

The Power in Facing the Possible

Nobody knows what tomorrow brings.. And facing the unknown is scary. This is true for anyone-- even with the cleanest bill of health. 

Having a child with a very rare and specific heart defect seems to make this fact ever more apparent. 

I've joined a few heterotaxy and other heart related groups on facebook. Some of those groups have put me in touch with parents of children with similar diagnosises. It's kind of a double edged sword. Every day, kids like Jack pop up on my news feed. Some doing well, celebrating heartversaries (anniversary of a heart surgery) and going home after long stays at the hospital. I love seeing others side by side pictures of their kids post op and how they look now. It's incredibly encouraging to see these kids growing up to go to school, play soccer and live relatively normal lives. 

Then there's the other side of the sword. I also see the kids that are hitting those dreaded bumps in the heterotaxy/cardiac road. I read parents requests for prayers and positive thoughts for their little ones that aren't doing well. I read the updates that they've been in the hospital for a month with no end in sight and how heartbreaking it is to watch their child suffer. I see pictures of sick kids hooked up to so many IVs and leads I wonder how the doctors and nurses even keep them all straight. I see kids waiting for transplants and surgeries. I see the hopeful moms and dads slowly losing steam and their once bright blaze of positivity and hope all but snuffed out, barely leaving a visible ember. 

I think it's important to see the good and the bad.. The positive and negative possibilities. Is it scary? Yup. Does it keep me up at night? More often than you would even imagine. Knowledge truly is power. Seeing all that could be for Jack just helps me feel that much more prepared. And being prepared makes me feel powerful.. As if I have the upper hand over the future. If I believed that ignorance was bliss and turned a blind eye, it doesn't change the fact that hear kids in a bad way could be Jack someday. Just because I pretend it's not a possibility won't magically take Jack on an easier path. The sleep you lose when your child is facing adversity can always be made up. The work you have to miss is just that.. Work. It will be there after the dust settles. The mental and emotional turmoil, however is the part that can take you by surprise and sucker punch you in the gut. It's something that sticks with you. It's the hardest part as a parent. If refusing to be ignorant to these images and these other families stories helps me better prepare my mind for what's to come, I will follow every heartbreaking word. It will only help me be the best parent to Jack with the best state of mind when our time comes. Our turn will come, I accept this as an inevitability. And I choose to be ready for it. 

Good Things Come in Small Packages

Jack had his 18 month appointment with his pediatrician yesterday. Last visit, his 1 year appointment, he was in the 1st percentile for height. Yea you read that right.. That is a thing. Know what percentile he's in now? ZERO! Don't believe me? Peep this..

Yea. My peanut is legit a peanut. But you know what? His oxygen sats are still in the 90's! He also gained a couple pounds.. And really that's ALL we care about. A high oxygen sat number just means his heart is doing what it should and his next surgery will continue to be pushed back into the further future! In my mind, he can stay a little man forever.. As long as his heart does its job. 

Literally sat like a perfect little man for o2 sats. 

Cheese!

Realization of Limitations

Today was a perfect park day. It was 78 degrees out, sunny with a light breeze. I was carrying Jack and holding Evie's hand as she walked by my side. We were walking over to a small barn to check out the animals. Upon reaching a giant stretch of grass, I put Jack down to let him walk the rest of the way. It felt so good.. The sun on our faces, fresh air in our lungs. Jack walked not even 20 feet and stopped dead in his tracks. Breathless, he managed to squeak out a winded "mama" as he reached his chubby little hands up to me. I scooped him up in one quick motion and continued to walk. I could feel his heart beating a mile a minute. His breaths were shallow and labored. For the first time in a long time, I got the feeling. That yucky pit in the depths of your stomach kind of feeling.. With a dash of helplessness.

In the CICU after his surgery, I spoke to a nurse about what Jack would be able to do as he got older and if he'd have any physical limitations. She told me to let him go and do.. Don't impose limitations on him just because I think he can't or shouldn't. He would learn what his own limitations were on his own. 

In my mind I was thinking I wouldn't have to worry about this until he was a little older.. At school, at recess, playing sports.. Not walking in the park on a 70 degree day. Nevertheless, there we were. I was taken aback.. I know it sounds small and stupid and it shouldn't bother me the way it is. It almost feels like the tip of the iceberg. We've been coasting along so smoothly that it almost doesn't seem real. I feel like I'm constantly waiting for the other shoe to drop.. And today I feel like that shoe has begun to cast its shadow. 

Jack at the park.. One pooped pup 

The Great Binky Debate

Binkies. You either swear them off or swear by them. Evie made it easy.. She never liked taking a binky. We never had to stress about weening her off because it was never something she was interested in. Jack is a completely different story. 

Nothing gives me more anxiety than what other people think about Jack still using a binky. Some have made off hand comments about that thing still hanging out of his mouth. Why does he still have it? Why does he need it during the day? Why don't you just make it available at bedtime only? I get it people.. Maybe it's getting to a point where I should start weening him off. But you look at his binky and see a crutch.. A hunk of plastic that needs to be phased out. I see something much different.

Flash back to almost exactly a year ago. Jack had his first open heart surgery at 4 months old. My precious baby boy... Ripped open, machines pumping his heart, keeping him alive.. To mend his little heart. After surgery, for days, I could not pick up my son to comfort him. At a time where all he wanted-- no, NEEDED, to feel comfort and that everything would be ok all I could do was stand by his bed and watch him suffer in pain. Until 4 months, Jack didn't take a binky. After heart surgery, it was a source of comfort.. Comfort I could not give him.

I know it's silly, but I think the binky means more to me than it does to most mothers. I owe the binky more than most. So no, I'm not really ready to just toss it aside just yet. Neither is Jack.. And I'm totally ok with it. 

See You in October

Jacks cardiology appointment on Friday went amazingly well. 

We loaded the kids in the car bright and early and headed into town. 

Evie was very excited by the promise of a giant fruit cup upon arrival.

The kids loved playing with the magnetic boat, sand table while we waited.. And waited.. 

Finally it was time for a weigh in and height check. His weight has been pretty much stuck at 18 pounds for months now so that wasn't a surprise, but he has been growing height wise so Dr. T said he's not worried.. So we aren't either..

Next up on the agenda was an EKG. Jack was less than thrilled about the stickers and having to leave them on.

Next was the echo.. Easily my least favorite part of the day. He just screamed and cried the entire time.. I literally had to wrap myself around him so the tech could get some pictures.. It was pretty brutal.

Evie was a little freaked out by it. At one point she curled up on my legs as Jack screamed.. But she dug deep and comforted her brother with gentle pats and a couple "it's ok Jack Jack"s

Once we finally met with the cardiologist it was smooth sailing. They were happy with how he and everything inside looked. He still has a leaky valve but it looks about the same. He said they will probably be able to repair it during his next surgery, the Fontan, because it's not worth opening him up now just for that. So with all that being said, we were told to come back in 6 months! Which is exactly what we wanted to hear. 

So see you in October, BCH!! 

Mystery Jack Cheerleader Strikes Again!

I came home from work and food shopping today to THIS! 

This incredibly kind, generous mystery Jack cheerleader sent us a superman card before.. No name, no address. And now they've done it again! 

I don't know who you are.. I feel like I should know that lowercase "a" but I cannot for the life of me figure it out! It's driving me (lovingly) bananas!!! I implore you to let me know who you are.. I won't post it here, I won't tell a soul.. I just want to be able to thank you!! Your kindness is overwhelming.

10 Days..

In 10 days we are heading to BCH for a cardiology appointment. It's been a whopping 6 months, the longest stretch of time, since we've been to the heart center. Jack is doing so amazing and I feel like it's going to go well.. But there's always that nasty little knot in the pit of my stomach making me say "but what if it doesn't?"

Jeremy put it perfectly on Easter Sunday. Best case scenario they say he is perfect, see you in 6 months. It's when they want to see him more frequently that you know they are thinking ahead and my head and heart sink at the thought of it: surgery.

Keep us in your thoughts and send Jack some good vibes! We're ready to just get it over with! 

Meeting the Easter bunny with big sis Evie

Looking handsome on Easter Sunday

Enjoying some ice cream cake... And brushing his teeth in between bites! 

This Jedi is going to use the force to ace this cardiology appointment!