Friday, September 7, 2007

It's A Heart Thing

We've had a little bit of a rough day today...Kate has not wanted to eat. We had a speech therapist come in and she doesn't think it has to do with her swallowing or eating skills. Her heart is just not clearing off enough fluid and so she is constantly out of breath which just makes it really hard for her to eat. It's an appetite issue. She feels like crap and just doesn't want to eat.
The doctor on this evening ordered some extra lasix (diuretic) to help clear some of that fluid off of her lungs. She has perked up a bunch this evening and appears to be feeling better...waving at everyone on her walks.

Days like today are pretty's hard to see your kid refuse to eat...when you know she needs nutrition so desperately...and no matter what you do or say....SHE ALWAYS can't make her eat. Except..Nana had a little bit of success with Haagan Daaz Vanilla Swiss Almond ice cream. Her eating is significantly down today and she lost some weight again.

Andy went home again this afternoon, in an attempt to spend time with Seth and do some work preparation. Nana came down this afternoon, as I really don't want to be here by myself...that is when the bad news seems to always come.

So...the long long road continues...we pray pray pray that today was an exception and the lasix will do the trick to help get off that fluid. We are anxious to have another good talk with a cardiologist, but know that probably won't come until Monday.

Her heart is just not keeping's working so hard...but right now, it isn't enough. We desperately need your prayers right's a tough tough day and hard to see your child suffer.
Kate with one of the only 2 things she wanted in her mouth today...her paci or a washcloth!


Anonymous said...

Dear Krista and Andy,

Right now you are overwhelmed, stretched beyond your limits, having navigated through some of the darkest of life’s storms. You’re beyond the end of your rope, having cleared so many obstacles, only to be faced with other barriers.

But you will keep on keeping on. There is love and strength and compassion out here to support you in your fatigue. At this moment, life doesn’t appear fair or right… and it’s not. But there are no perfect lives, nor are there any guarantees for anyone.

The “what ifs” have laid you low, and once you put those aside, and stay in the “here and now” your passage will become immensely less toiling. You will be free to enjoy the goodness that is right in front of you this very moment. The giggles, the smiles, the milestones, the soft touches, the warm murmurs, the joy of being together. It all only gets too heavy to bear when your mind goes so far ahead that you can’t see your feet!

Take the time to do something kind for yourself. Celebrate the moment that is now. None of us are given to know the future, much less to control it. Let your friends and family and faith help you catch your breath. There are untold numbers of people reaching out to you in thought and prayer.

Love and Hugs, Susan