Friday, April 13, 2012

Where We Stand

Remember that time Harper was born and after weeks in the NICU we walked out of the doors and took our baby home...but her heart was in reeeally bad shape and we just were waiting until a better time to do surgery?

Then, that time Harper had her first surgery and it went well...except for the whole "she still has a hole in her heart" thing. So we walked out of the doors and took our baby home, but in the back of our minds, we were constantly haunted by the possibility of another surgery?

Then this time when Harper had some random tissue growing in her heart that needed to be cut out and the surgery went well and we were supposed to walk out of these doors, hopefully to never come back and to not even have that immediate fear lurking anywhere around us?

Well, that's what was supposed to have happened. But it didn't.

Like Dustin said, Harper had some leakage around her Aortic valve before this surgery and immediately after. This wasn't surprising for anyone. What was surprising was when the leakage graduated from mild to moderate. It wasn't supposed to increase. At the time, Harper's heart was under a lot of stress...I mean, we were just a few days out from surgery, she had a lot of excess fluid all over her body, and her lung had collapsed after all. So the hope was that after things calmed down and we got all that fluid out, the valve would look different.

So even though we weren't expecting another Echo before we left the hospital, Dr. Robinson ordered a chest x-ray, blood work, and another echo cardiogram for yesterday morning.

And then he came in last night to deliver more bad news.

The Aortic valve, which we were hoping would have gone back to mild leakage, is still the same. This, in and of itself, isn't that devastating. We're still just 1.5 weeks post-op and there is still time for it to calm down a little as the heart adjusts to it's new "geometry" (as Dr. Robinson calls it).

So, the new and discouraging part is that Harper's Mitral valve now has a moderate leak as well. What actually happened here was that it was damaged during the course of the surgery and there was just a tiny leak that was seen on the echo immediately following surgery. But that leak has also graduated to a moderate level.

Just for clarification, I have no idea what moderate means, but I do know that Dr. Robinson's unofficial scale only includes mild, moderate, and severe, so moderate seems just a little too close to severe for me to be comfortable with it.

So the Aortic valve leak can be somewhat controlled with medicine, which Harper will be on for years and possibly life. There aren't any outward symptoms of this leak, so the severity of it will be determined by regular echo cardiograms.

The Mitral Valve leak, however, can cause symptoms of heart failure...kind of the same thing we dealt with before her first surgery to repair the VSD: not eating, vomiting, rapid breathing, clamminess/sweatiness. This valve does not respond to medicine and the severity of it is directly related to the severity of her symptoms. So we can check it with an echo cardiogram, but that information is only relative to how her body is handling it. It can look like a severe leak, but if her heart is handling it well, nothing will be done. However, it could also look like a mild leak on the echo, but if it is causing heart failure, obviously something must be done. And that something is...you guessed it....open heart surgery to repair the leak.

The plan now is to just go home and closely monitor Harper with Dr. Robinson. We are hoping to go home tomorrow, but I've learned not to get my heart set on anything. I can't wait to get our family back under one roof. I feel this intense restlessness in my soul when we are in three different places, like we have been this week.

As Dustin said last night, "I'm just so tired of bad news." We are pretty weary of this routine. I feel like we barely escape one problem, just to run straight into another one. I was hoping to get her heart all sorted out before she was to an age that she would start remembering all of this. More than anything, I just want my baby's heart to be fixed, but I'm beginning to think that may never happen.

I could go on and on about the heartache and disappointment I feel, but I'll spare you that. What I do know is that I have to come up with a better coping strategy than the crying all the time, anxiety, and depression I resorted to these last couple of months. I think I'll just go with denial this time. I want to live our lives as full as we possibly can. I want to have fun with my kids. I want to worship with our church family in Snyder. I want to serve others and teach our children the kindness and generosity that has been so richly shown to us. I want to forget about valves, and oxygen saturation, and heart failure. And while I can never really forget, I can choose to not let it be my focus and consume me.

So we'll walk out of this hospital (hopefully) tomorrow, knowing that there is a good possibility of coming back, but I'll hope that one day...it will be different.

5 comments:

Cheree Tate said...

Oh, Amy. There are no words.

I love your family. I love that little girl.

It is definitely not the same situation, but a dear childhood friend of mine recently brought this verse to my attention--Job 2:13. I'm sitting with you....

Steph said...

I have been following your blog since before your little girl was born and our little boy was born. I hadn't read your blog in a long time, but was drawn back to it this evening, and I am so sorry you have had to go through such heartache again. I remember our NICU stay with our son, Callum last year, and it was so terrifying.

She is a strong little girl! I will certainly say a prayer for her and for your family!

Take care of yourselves...
Stephanie
http://theferriegirls.blogspot.com

Matt H said...

Regular prayers go up from the Hall family!

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His Touch said...

I am lifting your little girl up for a healing. God is so powerful and HE can do anything. I do some blog surfing after I post my own blog. Your blog is so colorful and full of love. You are an amazing young family. Thanks for posting your needs. Love from Texas. Mary Kay

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