Thursday, May 30, 2013

Looking forward

When the doctors approached Scott and I about the very real and needed option of heart transplant for Annabelle, we were devastated. We'd always known that transplant was in the cards for her at some point, but we were thinking teens to early 20's.... not < 1 year old.

Because of this abrupt news, we requested to get some 2nd opinions for 3 of the "big" hospitals that specialist in pediatric cardiology. Two of them came back and immediately agreed with the transplant option.
2011: My blue baby, swinging & sleeping, waiting for her heart!

The third took a little more time. And since we were racing against the ticking clock of her failing heart, we opted to go ahead and list.

Then the third opinion came back.

They suggested that we consider a bi-ventricle repair, or in other words... try to repair her WHOLE heart... not replace it... not continue rewiring to only use half.

But to attempt to GROW her very small left ventricle.

We were, in honestly, completely shocked. I'd known that this repair was an option for some less severe cases, but had been told since the day of her birth that this was completely out of the question for our little girl. I'd never considered it.

But here we had the TOP children's hospital in the country telling us there might be another way. A way for my child to not have to worry about her body rejecting her heart for the rest of her life. A way for us to not worry about her over exerting herself because she was living with only half a heart.

HOPE. That is what I felt. A very slim ray of hope.

Against all of our doctor's recommendation, we requested the tests that would give us a better idea if she was truly a candidate. We were given the criteria she'd have to meet, and told that there was very little chance she would.

The results came back in. And the size of her ventricle ended up being MUCH larger than they had anticipated based on her normal Echos.

We were blown away.


Then we were faced with the real decision. Choosing transplant meant that she'd have a whole heart... but we'd be waiting while she slowly got worse and worse. There was a real chance that she wouldn't live long enough for her to receive a heart. And there was only a 70% 5 year survival rate even if she did.

But our other option... was to uproot our family and basically move to Boston. We had no idea if our insurance would even pay for the move, and honestly, what they were suggestion was VERY new and VERY controversial.

In the end, after much prayer and council, we decided the risk of the new procedure coupled with the fact that we'd totally be separating our family, made us decide to stay here and continue our transplant course.

When we made the decision, I remember fearing that I would regret it. What if she died before she got a heart? Would I question my choice that we made in that moment? What if there was a complication with the transplant? Would I always wonder?

Yet, if we'd made the opposite choice and it didn't work, I'd have always questioned that way too.

I remember choosing in my head that day that I would move on with confidence. That God wouldn't let us screw this up, that HE had our backs and if we were to go to Boston, he would have made it abundantly clear.

I've done pretty well at  not regretting. My sweetie is almost 3 and is over 2 years post transplant, and THRIVING... behind, but doing fabulous and making progress.

I'm so thankful for the LIFE of Annabelle that God has blessed us with.

Then last night, I read this fantastic article.  My first reaction was elation. While I know they are referring the study they were attempting to get Annabelle involved in, I'm SUPER excited that they are being able to make strides to significantly help our single ventricle babies. Funding for heart research is VERY low compared to other childhood issues, especially when compared with the significant number of children that are affected. So these big steps are HUGE.

But then... a very small part of me had this little tingle of regret. What if... What if we'd gone to Boston and tried to repair her heart? Would it have grown? Would she be a little girl today with her OWN heart that was beating FOR her, her body not trying to fight it every day? Would she be able to battle normal colds and illnesses without fearing that her body won't be able to fight them? Would she have been able to make strides sooner and do things like eat and walk and talk earlier (or in the case of eating, at all?)

Immediately though, I slapped my hand and told myself to get a grip. We made a choice that we felt God was calling us to make, and wondering what if helps NOTHING. I'm SO thankful for where God has brought us, for the work he has done in our family and in our Annabelle. I'm a firm believer in LEARNING from the past... but regrets and what-if's help no one. They only bread discontentment and sorrow.

Looking forward... that's what I want to do. I want to LOOK FORWARD to all the things God has in store for our family, for my little miracle.

Because looking back gets my eyes off Jesus. And might make me run into a pole.

And running into poles are no fun.


MarcyB said...

You and your family have been through so much! I think you are correct in not trying to second-guess yourself or God. I've been reading your blog off and on for the past several years, and have been struck by something that seems a bit...inconsistent. You've said several times, if I remember correctly, that you don't support the Affordable Care Act. It doesn't seem, though, that you and your family were able to afford your daughter's medical care yourselves, so I assume that the government, insurance, or someone else paid for it. Several people in my family were unable to get desperately needed medical care in recent years because they didn't have health care insurance, so this is a bit of a personal issue for me. I think everyone should have the same access to health care that Annabelle had when she needed it so much.

Krista Phillips said...

Marcy, I don't get into politics much on this blog because, well, partially because I'm VERY passionate about my particular beliefs, and never want to alienate those who do not agree with me. I believe God calls us to show love and kindness to all, even those who don't agree with us or don't share the same political party affiliations.

That said, to answer your question, I was and AM against the ACA. Not because I'm against people having insurance or healthcare though. I think it's a big untruth to label all those who disagree with the bill as "against" all healthcare insurance or all healthcare programs (not saying you're doing the labeling, I've just been approached by many who do. and I'm obviously not against health insurance!!!!) I just don't believe the current bill is what we needed, and believe it has a lot of flaws that will cause more harm than good in the long run, and that makes me sad.

I understand that it may benefit our family eventually (right now, there is no difference...) however I don't base my thoughts on how a government should be run on my own personal benefit.

There are SO SO SO many things I could say on the topic, but again, I'm a bit overly passionate about it, so I'll just say, I respectfully and lovingly agree to disagree. Thank you for reading my blog, and I hope that you will continue even though we have a difference of opinion!!

In the end, the important thing is JESUS and keeping our eyes on him. He has a pretty decent healthcare plan himself, and it's the one I want more than anything:-)