6 Months Post Op

 Whoa time flies! Distance Learning took a lot of time and energy during the day, and my kids took the rest of my energy! I’ve been asked tons and tons, how’s Em?

He recently had a heart appointment at the beginning of the month. During the echo, the doc noticed that the leakage (regurgitation) was the same as last visit. This is good. This means that the cow part the doc put in to assist his flap is holding. If we have more leakage, we need more open heart surgeries. Basically, the blood leaks back into his lungs and creates major problems.Yay. 

What he noticed is the stenosis is getting worse. Let me quickly explain Em’s stenosis. Em’s mitral valve is narrowed (stenosis). It just means it’s smaller and narrower than normal. This makes it difficult for the blood flow to even go ANYWHERE! His first open heart surgery (OHS) was done to release some pressure and help widen the valve a little. The doctor poked some little holes to widen the valve. It didn’t really work. The second doc from children’s hospital said it was a good effort, but we need to fix the valve flap, too. 

So, what do we do about stenosis? Nothing. Like usual in this game of hearts, we sit and wait. What are we waiting for? His appointments have been bumped up to every 4 months instead of 6. We also need to look for any signs of heart failure. Scary right? Don’t worry, mom gut is always alert. I know to look for. If any of the look-fors show up, we take him to get another echo and see what’s up. So, right now…it’s a wait and see game. This is normal in the CHD world. No news is good news.

All in all, Em is much better right now. He is eating sooo much. He’s like a teenage boy making up for the g-tube months. He especially has mommy’s pallet of spicy foods. 

I always feel like there’s another… but… coming with Emmett. This but is about how he is delayed. It is obvious that he would be delayed compared to his peers because he is a preemie. We have to take the adjusted and actual age into consideration. The easiest way to think about this age calculation- he might be two next month; however, mentally and physically he’s not two until his due date in October. So, he is like a  22 month old. 

We noticed that Em doesn’t talk. There is no effort to even say mama or dada. He communicates with us by grabbing what he needs, and pointing or showing us. For example, if he’s thirsty, he will grab his cup and walk to the fridge. While at the fridge, he will whine and then eventually scream. That’s our life in a nutshell. 

If you remember, Holden went through a lot of the same delays due to being on the Spectrum. He is highly functioning and thriving. He has his moments of controlling his anger, but he is a very high functioning kiddo. So, in order to rule out anything with Em, we got him assessed.

Emmett had services prior to covid for OT and PT for being a preemie, so I reopened his case at Tri-counties and got him reassessed. Basically, he is assessed as low as a 15 month old in some areas. This is a significant delay, and we need to get some more therapies. Em has qualified for Ot and PT once a week. Speech is twice a week. 

I think I am most excited about PT. Think about this… you are doing most of your strength work at a baby around 9/10 months. Rolling over is mastered, and you start the crawling and cruising. The MUSCLES you have to use to do these exercises is insane. Well, Em had his first OHS at 9 months. This is an essential time in his life. THEN I’m not even allowed to pick him up normally for 10 weeks because his rib cage has been cracked open. He’s not even using any upper body strength during healing because it’s just too painful. He has lost his muscle matter! (Just like me during covid lmao). 

On top of all that important muscle time, his body is now preparing him to walk. His muscles are growing, he’s gaining muscle memory…JUST KIDDING. Let’s have another OHS!

As you can imagine, he’s totally weak. So, that is why I’m stoked for some PT. Also, this kid is BRILLIANT. You can just tell. I mean, he is full blown communicating without talking. So, I’m excited to hear what he has to say, too. LOL.

If you’ve made it this far, thanks for all your love, prayers, and everything. It’s been rough, but we can get through anything.