Thursday, March 29, 2012

Two months later

Here  it is, two months later, and at the behest of many out of state friends and family, I am going to update everyone with the latest on little Dane. First of all, let me start out by saying he is doing well.  We have been to every specialist and doctor known to mankind, and like I told a friend earlier today, nothing earth shattering has been revealed, although a rather large part of me needs to add *yet*.  So far, we have a small left ventricular septal defect, which means his left ventrical pumps at 50% efficiency instead of the 55-60% efficiency for babies his age, his head is smaller than normal for his age, but let it be said they are not adjusting for prematurity and it looks completely normal, he still doesn't have a completely coordinated suck/swallow reflex but that doesn't stop him from downing his bottles, and he is being tested for pituitary issues because, oh yeah, he has a mid-line abnormality in his brain that he may/may not grow out of by his first year.  It's a lot.  Too much in fact.  I think when you have 12 doctors appointments in one month, that is asking a lot. 
Other than going through his whole body with a fine tooth comb, we have been happy with our little man.  We switched pediatricians because we wanted him to be in the same medical system as his specialists, and this new one is amazing.  She has the ability to discuss scary possibilities in a non-scary manner, unlike my previous pediatrician that I still love and send Claire to, just not Dane.  He is holding his head up now really well, he smiles and gurgles at you, he just started splashing his fat little legs in his baby tub, what Claire likes to call his "swimming pool".  He is warm and snuggly and loves to be held to the point that you can't put him down, but I still blame Dawn for that, whom we still go see from time to time.  Stephanie, his other NICU nurse is still in our lives too, and we are thankful for them. 
As for the parents, we are dealing, and its a little easier to breathe now.  Andrew is handling the situation and anything that comes up like a champ, his favorite toast is, "To Dane, no matter what".  That being said, there are some definite changes from all of this.  I find that I need more routine and organization now than I used to, and I like to stay home a lot more than before.  Chalk it up to energy being put to the baby that was formerly able to be put towards outward things, as well as more uncertainty and scariness sometimes.  Well, a lot of times.  I also love my friends a whole lot more if that were possible, even though I show it less now.  I am not nearly as light-hearted and fun as I used to be and have become a lot more serious.  I would say my fun quotient right now is zero, possibly in the negatives.  So it is nice when people still call and want to come around or go and do things, and I appreciate when people do that because I don't have the energy to reach out and be the friend I used to be.  I also have written off people that drain me or make my life harder.  I'm just not dealing with that, and to be honest, no one should.  I find that I enjoy reading about friends that are doing cool things with their time, like renovating houses (Jami Dow Wolbers I'm talking to you), doing cool family things, or cooking, gardening.  There has been one gift in particular out of this. I've had two people in my life that are dealing with the same type of situation, one who ended up losing her daughter and one that I've never met, (but when I do I am giving her a huge hug), and I have been able to be a support to them and hopefully be encouraging and helpful.  My friend Arika was a rock for me, and it feels really great to be able to help other people in the same situation.  I think as time goes on it will get easier, the heaviness will lighten, and no matter what happens with Dane we will all love him and be really happy.  It will be nice when the time comes where I feel like I can take a deep breath again.  Before I know it I will look back on this and wonder what in the world I was so worried about.

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