Thursday, May 28, 2009

Hole Hearted

"Hole Hearted"
Life's ambition occupies my time
Priorities confuse the mind
Happiness one step behind
This inner peace I've yet to find

Rivers flow into the sea
Yet even the sea is not so full of me
If I'm not blind why can't I see
That a circle can't fit
Where a square should be

There's a hole in my heart
That can only be filled by you
And this hole in my heart
Can't be filled with the things I do
Hole hearted
Hole hearted

This heart of stone is where I hide
These feet of clay kept warm inside
Day by day less satisfied
Not fade away before I die

Rivers flow into the sea
Yet even the sea is not so full of me
If I'm not blind why can't I see
That a circle can't fit
Where a square should be

There's a hole in my heart
That can only be filled by you
And this hole in my heart
Can't be filled with the things I do
There's a hole in my heart
That can only be filled by you
And this hole in my heart
Can't be filled with the things I do

Hole hearted
Hole hearted
Hole hearted
Hole hearted

I don't bring these lyrics up in gest. I truly thing of this song every time I take Presley to the cardiologist. I feel Presley will feel a connection to this song one day. I am sure I will have to introduce it to her since it is not played too often these days!! Her hole truly can't be filled. I can't fill it, you can't fill it, no one person can fill her hole. God can!! And God will one way or another He will. I find myself praying more for the doctors than I do Presley at this point. They make a lot of decisions that affect our lives and if God is not leading those decisions then we are at a bad place. So, my prayer is that God is ministering to those doctors and focusing on their decision-making more so than he is mending Presley's heart.

When I read these lyrics I did not remember most of the words. The chorus is the main thing that sticks on in my mind. I mean, it is pretty repetitive! But looking at the verses of the song I can relate the words to Presley in the following ways:

-Our ambition for her life has changed drastically since finding out about her condition.
I guess at first we thought what sport will she play, what sport will she prosper at, who will she take after in height and weight, so on and so forth. Now, it is more like, if she plays sports will she be hindered, will this handicap her, will she prosper in any sport, will she ever get past eight pounds. My ambition for her has gone from what will she do to will she be able to do anything.

-I have a clouded thought pattern of the whole surgery thing. I am so confused and the bad thing is that I don't even get to choose! I do not wish for my daughter to live her life with a hole in her heart. Neither, do I wish for my daughter to have open heart surgery. I have no idea what my priority is and the fact that is doesn't really matter what my priority is is quite humbling.

-My inner peace comes and goes but mainly goes!

-When I read the part about rivers flowing I get a visual of the blood flowing from the left side of her heart to the right side of her heart. That is not a fun visual to have.

-Thinking about a circle fitting where a square should be puts me in my place. Presley is unique. She is not round or square or triangular. She will not fit in anyones box. She is God's unique design. He made her and He made her this way for a reason. My job is to not try to make her something she is not. My job is to know what she is and make sure she knows what she is and thrive on that!

-This hole will not be filled by anyone expect our Maker and Creator and He made and created her and He will make her whole again!

Thursday, May 14, 2009

The Waiting Game

Well, today was our second visit with the cardiologist. Presley liked this visit better as they did not have to take as many vitals as last time. They took her blood pressure and that was the hardest part! So, by this visit Dr. M wanted her to be nine pounds. Well, Dr. M keep wishing! She had not budged from her previous weight. She was still eight pounds five ounces. On a positive note...she did not lose! However, I heard more concern from him than the last time. He was discourage in that she had not gained like we hoped. So, the game plan is as follows...up the diuretic to three times a day, give her a potassium supplement twice a day, and up her calories to twenty-four calories per ounce. She is really only taking about an ounce each feeding right now. So, we are trying to get her to get more calories when she eats. We would like for he to take more ounces at each feeding as well. We would really, really like to see her take her bottles faster and not struggle so much. But hopefully, that will come in time. We go back to him in two weeks to do another echo and see if the hole has decreased at all despite her not growing. I will not indulge my thoughts in the negatives and what-ifs. To sum those up the next step would be a feeding tube then surgery. Again, I am just trying to be positive and trust in my Maker!! He has it under control.
I must say, though, that Tris has been doing exceptional lately. He got the second game ball of the season tonight and was so proud of himself! Tomorrow is "Popcorn with Publishers". This is where the students have written a story and are reading them aloud to their classmates and parents. I am so excited to hear him do this. Second grade has been the best...so he tells me!!!

Monday, May 4, 2009

Say what???

Ok, let me get this straight...I am supposed to take care of a two-month-old, an almost 8 year old, the dog, the house, my husband and all his endeavors, baseball, doctor's appointments, and myself?! You must be crazy!! Oh, and apparently finding time to blog is out of the question!! So, it has been a bit of an adjustment. I must say it is well worth all the chaos and sleeplessness!! This is an update and a shot in the dark that I might get back in the habit of blogging!! Don't hold your breathe!
We will start with me, since I am usually the last one to think of myself. As it should be no surprise I have very little news of my own. Other than I am in desperate need of a hair cut and color!!! Yeah, my whole world is in the hands of my two kids, which is alright with me!
So, here is what you really want to know...
Triston is almost 8!! Holy crap...that is unbelievable. That cute little 2 year old that used to call me "that girl" and would literally not be out of his dad's arms when I was around is about to turn 8. I cannot get over it. He is such a big helper these days. I tell him I don't know what I would do without him. He is finishing up his baseball season. He has done excellent this year. No more poor sportmanship...that has been a long time coming! He has come a long way. He did have a little head on collision with a team mate a couple of weeks ago. It was pretty busted up but pulled through it like a trooper. We are going to try something new this year and let him stay home this summer with me. I am sure we will have a blast!!
And then there is Presley. She has been the one keeping me the busiest. She is a whopping 10 weeks old now and only two pounds bigger than what she was when she was born. And knowing what we know now we need her to grow. We went for her two month shots and found out she has a heart murmur. We went to the cardiologist and were shocked to hear she has ventricular septal defect (a hole in her heart). It is 8-9 mm which is not small but not large. It is too early to say if she will need surgery or not. The doc wants her to eat more and grow so that her heart will grow and the hole will close up. He has her on a water pill in hopes that that will help her eat more. So far she has not improved in that sense. She takes a really long time to drink anywhere from 2-3 ounces. She has about 11 ounces to gain by next week or the doctor will have to take further steps to get her to gain weight. He may up her calories or give her another dosage of the water pill. So, for now we wait! We PRAY! And we love on her!! She is not in any pain and I think that helps me more than anything to not worry too much. I know that God has this under control and He will heal her in whatever way necessary. Until then, she will continue to cheer her brother on in baseball and keep wrapping herself around her daddy's finger!!
Speaking of her daddy, he keeps himself busy as well. He is holding down two jobs and walks around with the bare minimum of sleep. I get to help him with his paper route every once in a while. Believe it or not we make it pretty fun! He got to go ride his four-wheeler at a track not to long ago and he was like a kid in a candy store. He rode for 7 hours and was beat when he got home. But I suppose it was well worth it!!
So, we are all still alive and kicking (some of us more than others). We are just taking it one day at a time and enjoying every minute of it.