Quinn Cardio Update, Edition 785

I am beginning to accept that at this season in our lives, regular blogging just isn't going to happen. There are just not enough hours in the day, and that's ok. I still read my favorite bloggers regularly and get my "dose" in the a.m. But as for me throwing out any sort of content, it's beyond my energy level. 

That being said, there are definitely a few things that I still want to make sure I document, if nothing but for posterity's sake. One of those things is all things cardio-related for Quinn. That being said, I am so grateful to God that I've had nothing to report for 8-9 months. (If you follow me on facebook, you probably already know this update - my apologies for repeat content).

This past Monday we had her cardiology check up. Basically a full work up of EKG, chest x-ray, echo, consult with our cardiologist and more. 

Y'all. I just can't explain what I feel before these appointments. 

The uneasiness always sets in a few days before. I feel it in every fiber, every bone, and with every breath that I take. It can easily consume my thoughts if I don't consciously push them away. I see this child almost every waking minute and I know she's a walking, talking, crazy miracle. But what lies beneath?

We never know.

After a fun and inspirational morning at iBloom (more on that at a later date, but dang, what a blessing in my life this year), the twins and I headed out for lunch and then met Daddy for the Ryan drop off so I could attend the appointment with Quinn.

And like always, this child just blew me away with her grace, her smiles, her laughter, and NO TEARS. She seriously is just about the best patient I've seen. I don't openly brag much about my kids, but man, I am so proud of her tenacious spirit. It's beyond anything I could ever be.

Per usual, she was absolutely still during her lengthy echo (about 50 minutes long) and never cried out one time, even when I knew she was getting hungry and tired. We finally saw the doctor after about 2 1/2 hours and received wonderful news.

While her heart still looks "bad", and parts are "bad", it's still working GREAT for her. She is clinically doing wonderfully and developmentally tracking well. I could hardly hold back tears when the cardiologist told us that we earned another 9 month "hall pass". It was answered prayers.

See, the thing is, at some point the "bad" won't work "great". It will begin to weaken her heart and necessitate multiple repairs, including stenting out her pulmonary arteries to increase oxygen flow, replacing her Pulmonary Valve (right now only done in the U.S. with open heart surgery), and perhaps a few other things to assist her right ventricle.

And we don't know when the "bad" will come.

But we cannot focus on that. I have to continually remind myself of that, otherwise I would be gripped in absolute fear all of the time. And that would do my children (or my husband, or me for that matter) any favors. So today, we take the victory. One step, one appointment at a time. And thankfully and hopefully, the next one is a long NINE months away. Time to keep steppin' on.

P.S. This past month, we also celebrated the three year anniversary of Quinn's two open heart surgeries, or her "new heart days" as we call it. Three years? I don't even know how that is possible. In one instance, it seems like a lifetime - almost like it happened to someone else. And then the next, I can be brought back to those emotions, the smell of the hospital, the ding of the elevator, the swishing sound of the respirator, and the pumping of the ventilator. Oh my, little girl. You've come so far. 

Love to you all, 

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Kendra Martin Photography said...

Love you!!!

KatiePerk said...

She is such a doll! A brave doll!!

April Lynn said...

she's adorable!

Stacey Ristaino said...

I stumbled across your blog from Dayton Moms group, and saw your little one had a CHD. This hits so close to home for me. My daughter also has a heart defect and we currently go in every 6 months to monitor. If her condition necessitates, she will also need open heart surgery. Thank you for sharing your thoughts and story. I'll keep you, your daughter and family in my prayers ❤️

Anonymous said...

Thank you for your blog! I feel the same before my sons heart check ups. He is three and is doing great. Most days I forget but the week leading up to the appt I feel like I can barely breathe. God bless your little warrior.