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!

Overwhelming

In a world where it can be hard to find the good.. The kind.. The generous.. We have seen more of it than we could have ever imagined being possible.

The Dally Cup was such a surreal and amazing day. We cannot thank the Belmont Police and Fire departments for all of their hard work in organizing the event.. As well as everyone who donated goods to be raffled, friends and family who attended and everyone who participated in any capacity. I can't even explain how touching it was to see so much love and support for Jack in one day. It's really indescribable. 

The response to the fundraising site has been amazing! So many friends, family and perfect strangers have been BEYOND generous and donated money to helping Jack. 

The only word that can really describe The Dally Cup experience and the response to the youcaring.com page is this-- overwhelming. I'm Jack's mother, and I love him so much it almost physically hurts! But to see others loving him and showing so much support is just amazing. 

Jack at The Dally Cup 

Take the pillows advice!