Here's some pics of the fun...
The kid loved the pool
The kid loved the pool
Sadly, it's about Bodie's surgery date being changed. We got a call today that Dr. Starnes actually isn't available Sept 30th, so they're bumping us to Oct 7th. Eeek - that puts us a little too close to cold and flu season for my liking. We're going to ask them to put us on the waitlist for any cancellations before then. If there aren't any, then Oct 7th it is...
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And even a little chunk on his thighs:
The kicker is that most of this new chunkiness has come in the last week, when he has been on breastmilk only (other than his cereal and solids - which he continues to love, by the way) (we usually fortify his breastmilk bottles to 27cal using formula to help him gain weight, but we had run out and I made the mistake of ordering from a company that took a week to get it to us - so we've been without it). Since he's been on breastmilk only, he's really upped his intake and has gained the same if not better than when we were adding formula. Go figure. If he keeps it up, guess I'll be talking to his cardiologist about backing off on the formula a bit (no sense in giving him the formula at such a high rate if he can grow on a lower amount). At any rate, the growth has been really exciting for us to see - it seems his face is getting chunkier literally by the day! Go Bodie!!!
Our pre-Glenn consult with the surgeon is tomorrow, so I'm sure I'll have an update tomorrow night. It's a funny place to be in. Bodie, even though he seems so robust and healthy, is really hemodynamically unstable and could go downhill very very very quickly, so we are so anxious to get him past the Glenn when he'll be SO much more stable. The mortality rates are also highest at the stage we're in right now. And most kids do really well with the Glenn - they call it the "drive-through surgery" since kids are usually out of the hospital in a fraction of the time they spent in the hospital after the Norwood. So, on the one hand, we would be thrilled for the surgeon to say "hey, guess what - we have an opening for next Monday. Let's put Bodie in there." But on the other hand, it is still open heart surgery and not all kids do well. I am daily thinking of sweet Wyatt, who never came home after his Glenn. We have no guarantee that Bodie will be one of the lucky ones who does really well and comes home. So, another part of us is hoping the surgeon will say "let's not rush it and give him a little more time to grow." The really tough reality of what we're going through is that it is always a possibility that the time we have with Bodie now may be the only time we ever get with him. And if we pushed him toward the surgery that might change all that, it would be very hard to live with. (Sorry if I'm rambling - a lot going through my mind right now.) So, what we'd really like prayer for tomorrow is:
1. The surgeon: please pray for wisdom, that he is able to determine the best time for Bodie to have his Glenn.
2. For Bodie's body: to continue to thrive until the time comes for his Glenn.
3. For Dusk and I: for patience to rely on God's plan and know that HE has Bodie (and our family) in the palm of His hand and the outcome of tomorrow's meeting will be exactly as He has ordained.
You have taught us so much about strength, determination and the gift that life is during the past 6 months. 6 months ago, we could never have guessed that our path would be this tumultuous, this difficult, this frightening, this fraught with heart stopping moments. BUT, we also could never have guessed it would bring such joy, such beauty, such gratefulness and love. You are a WARRIOR. You are such a STRONG little man. And most amazing of all, amidst everything, and against all odds, you are FULL OF JOY. You remind us every day of God's blessings...of the miracle of life. We could not be prouder of you, of your sweet radiant disposition and your lion's strength and will to fight. Today, we celebrate you, sweet boy.
Of the 181 days we've been blessed to have you here on earth with us, you have spent 95 of them in an Intensive Care Unit, 36 of them in a step-down unit and 50 of them here at home with us. You've cost our insurance company upwards of 3/4 of a million dollars (not to mention the other half a million that the hospital absorbed). You've had 2 open-heart surgeries, 2 cardiac catheterizations and more pokes, prods, lines placed and needle sticks than we can even count. We've almost lost you 4 times and each of those 4 times will haunt my memories forever.
But you? You don't care. Somehow, you don't even realize that life has dealt you a bad hand. To look at you, you'd never know all that you have been through. You are just like any other 6 month old. Silly, sweet and so stinking smiley. You hear your mommy or daddy's voice and turn and immediately start smiling. You seek out your sister from across the room and your entire face lights up. You are beyond ticklish and LOVE it when mommy tickles your tummy. You blow raspberries with wild abandon. You eat us out of house and home just trying to put fat rolls on your cute little thighs (and you're almost there). You are amazing. You are our miracle. And we couldn't possibly be prouder of you and more grateful to God for the last 6 months. We are so privileged to call you our son.
He is at SUCH a grabby phase. Has to grab EVERYTHING in sight (usually my hair!)