Life in 4-6 month intervals

It's interesting...this living life in four to six month intervals. The time that elapses between one cardiology appointment to the next. Not knowing what that next appointment may bring. Will I be brought to my knees with bad news? Will we leave with a sigh of relief and wave bye until next time?

 I've said it before, but most days I don't even think about Quinn's heart. I mean, sure I am reminded of it when I rub my hand up and down her lengthy scar after bathtime or when I read about another heart survivor. But most of the time, we just live life. We have to. Quinn's life will NEVER be defined by her condition. It simply is a part of her, not her whole being. I don't treat her any differently than I do Ryan. I don't raise her with kid gloves. We (hopefully) are raising her to not let this hold her back in any way and to always warrior ahead, no matter the circumstances or conditions. 

And my prayer is that is a lesson that Ryan will learn from his sissy as well. 

At any rate, I do talk about it. A lot. I write about it. A lot. It's never a secret and her story is one that we've chosen to share. And this is where I'll mention the ill-timed comment on one of my previous blogs. I say ill-timed because it came in right as I was mentally preparing for Q's appointment today. Not that there is ever a good time for a bad comment. I don't want to waste my breath for someone that isn't worth my energy, but if  Anonymous, if you are listening, I will not be quiet about Quinn. Ever. For a very good reason. Because us sharing Quinn's story has done amazing things. It's opened doors for people to reach out to me when they are going through similar circumstances. It's opened doors for me to work behind the scenes in the CHD advocacy and support world. And most importantly, it is healing and cathartic to share her story. And one day, she may want to know all of this. All of the details. And here they are. And the thing is, Anonymous, as the commenters below you so graciously pointed out, our heart children are NEVER cured. There is no cure for CHDs. They are not "fine". There's no remission for a heart defect. My child will never know what it's like to be without a cardiologist - she will see one for the rest of her life. Even if/when Quinn enters a "maintenance" state, there will always be check ups, always be follow up, always be testing. 

So, as politely and respectfully as I can muster, let me tell you a huge NO. Heart defects are a part of our life and our story. They will be talked about. And if you can't handle it, then I suggest you hit that handy little "x" in the upper right hand corner, close out my blog, and never come back. That's fine with me. And if you are a "friend", go ahead and de-friend me on facebook or whatever you need to do. I have plenty of friends, ones that care and ones that don't hide behind the cowardly veil of anonymity.

 And that's the last time I will speak of such comments. If you feel the same way as "anonymous" then my suggestions above apply to you as well.

Now, for those of you who have continued to pray along with us, thank you! This update is for you:

Today was probably the best appointment we've had in a long time - praise God! We had a new doctor but I liked him right off the bat. Personable, easy-going, attentive. Quinn was a trooper as usual. I got tears in my eyes on the drive there because Quinn just kept saying, "Mommy, we go to Quinnie's doctor. Mommy, I have a special heart!"

Yes, you do, my love. Yes, you do.

We had a few tears at the start of the echo but then she settled into Toy Story and didn't complain the entire time --- even when they bent her head backwards over a pillow so they could ultrasound from the base of her throat to see down into the top of her heart. (btw, for those who don't know what an echo is, it's basically like an ultrasound of the heart, using a wand & goo similar to when you are pregnant). Echos are long - usually 30-45 minutes, which is like an eternity for a toddler. But she always surprises me with her patience and willingness to tolerate the procedure, especially for a child that never stops in real life. 

And it never fails to break my heart into a million pieces to see my little girl just laying there with a wand over her heart, thinking that is normal. Usually a couple of times during the echos, I have to turn my head to cry a few tears. Maybe one day I'll get to used to it? Actually, I hope that I never get used to it. I want to feel that pain. If I could lay on that table a million times for her, I would.

At any rate, after the echo, EKG, blood pressure checks, etc the doctor came into review the initial findings and talk about last year's MRI. Using that information and today's results, it's their belief that Quinn is doing remarkably well. Yes, she does have multiple areas of pumonary stenosis (basically obstructions) that are interfering with the blood flow to the lungs and heart. However, the right side of her heart is tolerating it and functioning decently. Not perfect of course, but clinically she is doing great. So the determination was made that we are going to hold off on the catheter procedure right now. (Cath would open up those branch pulmonary arteries and allow the blood to flow unobstructed). However, timing is important - you want to wait as long as possible so she continues to grow and those arteries can get larger. To go in early would just guarantee more interventions later. H pulmonary valve is still "bad" but functioning for her. So we leave that alone for now too. Heart repair still looks great and for all things considered, we can scratch any concerns about that failing off of our list.

So strange, this heart muscle. All of these "bad" things but it's working. Thank you, God. Time continues to fight in our favor. And I feel like maybe, just maybe, God is doing some healing things in there. Just 3 months ago, we were pretty sure we were headed for cath in the next couple of months. Now they aren't giving us a timeframe. Could be 6 months, 12 months or more from now. Praise Him.

We will return in four months to see our new doctor who thankfully offices out of the Katy location - amen for that too! To not fight med center traffic, waiting room, or parking is a huge blessing. All of that contributes to a very, very long day. As it were today, we were in and out within less than 3 hours. Trust me when I say that's a miracle. We even had time to swing by and do a little Mommy & Quinn shopping for her special treat. Bribery is not a common occurrence in our house but I do believe she totally earned a new pair of pink shoes. Which she is proudly marching around in right now, singing at the top of her lungs, and endlessly tormenting her brother.

She has already let go the events of this morning and is back to normal life. 

Which is where we'll remain. 

For the next 4 months.

Prayerfully yours, 

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Libby said...

That's great that she had a positive appointment and you can all continue to march forward.

As for ignorant comments, I say if they both you delete them and let 'em go. I've been blogging for 9 years, and I get nasty comments, though not about anything so personal as this, and sometimes they still bug me. But the truth is, the internet is full of trolls who feel pretty smug making trouble hiding behind their anonymity. Newspaper sites are their playground. I choose not to give trolls the attention which they seek.

At the end of the day, it's your story and you can tell it however you want.

Lyric said...

Amen. I love your writing and your story. Quinn is a lucky girl to have you as a mom.

SuSu said...

Wonderful report! God is so very good! Sorry for your poor treatment by someone who is apparently unkind and self centered. Just know that your friends love you and care about you and more importantly, God loves you and is doing great things through you and Quinn!

Mrs. Meesey said...

I am constantly amazed at your strength. Don't let someone like that take that away from you. Your strength has been there since college, and I know it's only grown since then. You got this! I love you guys so much!

Keep on doing what you're doing! It's so important!

Love ya! Heather

Mrs. Meesey said...

I am constantly amazed at your strength. Don't let someone like that take that away from you. Your strength has been there since college, and I know it's only grown since then. You got this! I love you guys so much!

Keep on doing what you're doing! It's so important!

Love ya! Heather