Monday, March 3, 2014

6 Month Cardiology Check Up

We have to drive to town two and a half hours away for Mylah's Cardiology check ups.
It's a long drive, but so worth it raise our kids in this lovely small town. :) 

We headed that way this past Friday for her visit with Dr. Thomas. 

Mylah was weighed and measured and then had her EKG done. She slightly panicked when they started sticking the tabs all over her, but I just told her they were stickers. She was still nervous as they attached each wire. After a minute she laid still and calm for the whole test.

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Next we were off to have an ECHO done. We unfortunately waited a ridiculously long 45 minutes in the room for Dr. Thomas, but we survived.

Mylah climbed on the exam table like a champ and laid so still. Again she was nervous but did well.

Dr. Thomas was able to get much better views of her heart this time around. I guess being six month older than the last time helps a bit. Last time she fought us to lay there. She laid there patiently while he examined her heart.

The results? The gradient/pressure in her pulmonary valve is still the same as it was six months ago. Her right ventricle isn't enlarged and that is a good thing. As long as those two things don't increase dramatically we are on the right path to continue watching her grow and thrive. Many times when pulmonary valves are patched like hers is, it causes the right ventricle to enlarge. Luckily that isn't happening. 

I've had many people ask me if this means no more surgeries for our sweet Mylah. The honest answer is no. 

For the rest of Mylah's life we will always be watching her, being aware of how her body is responding to her repaired heart. Her heart will never ever be functioning at 100%. It was "broken" and then "fixed" but will never be fully healed.

Though she is a happy and growing toddler, the reality of her heart failing her is very real. We don't focus on this reality, but sometimes it sneaks up on me, I panic and then I take a second to cherish the small moments we have with her and the cute little opinionated girl she's becoming.

Does it scare us that she could take a turn for the worst? Yes it does. Do we worry that a small cold could send her to the hospital? Yes. But that is the reality of living with a child who has a CHD. Their hearts are broken, repaired, but never fully healed. It's the life we've been given, the life she lives and we just endure. 

We are so proud of Mylah and her enduring spirit. We've learned to love watching her survive her CHD. She's a fighter and also a very stubborn two year old. We learn something from her everyday and pray that her story will continue to spread awareness about CHDs. 

She's doing well and staying healthy. We will cherish every second with our precious Heart Girl! 

MRI

Today Mylah had an MRI to map out what we will do in the near future for her heart health. Currently her left ventricle is slightly ...