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Monday, June 21, 2010

Chronic lung disease

Yesterday I talked to one of the doctors, who told me this is what they are suspecting Ansen has.  It makes me sad for sure that he could have a chronic condition for life, all from his birth.  Its caused by the ventilation and oxygen and his respiratory distress sydnrome, which very likely caused scar tissue in lungs-making lungs fill with extra fluid that normally isn't there.  We have been told that its very likely he will go home on a daily diuretic, to clear that fluid out of his lungs on a daily basis and make it easier for his lungs to get the right amount of oxygen.  Yesterday, I was still hoping that maybe this wasn't the case, but last night, Ansen had to be put back on canula bc he had a really poor night with his oxygen saturation AND he gained about 3 oz in one day...which is all pointing to the extra fluid on lungs causing all these issues.

I feel INCREDIBLE guilt.  What if I could have waited another week or two until delivery.  I try to remind myself that my own outcome could have been totally different if that was the case, but I still do feel guilty nevertheless.  I wish I could make this all easier for Ansen.  My poor baby boy....I love him so much and I just want to cuddle him in my arms and make all this go away for him. 

Yesterday, Doug had an verbal altercation with a close family member....Doug claims he will never talk to him again now.  It makes me sad to see the family torn apart bc of others judgemental attitudes.  He used to talk to this individual pretty much every day, since he is close family.  All the sudden, this family member stopped answering Doug's calls, and this has gone on for months and months now.  Doug finally got a hold of him yesterday and this family member told Doug that he has been ignoring us for months now bc A.  him and his significant other can't stand that we homeschool   B.  that we have supplemental, secondary state insurance that helps us pay for the things that our crappy primary insurance won't pay for and C. that we had Ansen.  I think C bothered me the most, since I am used to everyone being judgemental about the other two things as it is.  This family  member told Doug we should have terminated the pregnancy and it upsets them greatly that we didn't.  After all I have done to get this baby into the world, its hard to hear a close family member that still thinks Ansen's life shouldn't be. Ansen is STILL fighting to be in this world.  How someone close to us can easily dismiss the value of Ansen's life AND hold a grudge against us for choosing to fight for Ansen's life....well I feel myself getting bitter about the whole thing myself.  None of this has been easy on us for sure, but once you hold Ansen and look into his eyes-its like looking at a glimpse of Heaven.    This little life that shouldn't be is highly valued by us, as well as by God, and I don't know how we are supposed to just forgive and forget this comment.  Obviously though, God doesn't want us to live a life poisoned by bitter feelings like this either though.  So what are we supposed to do in this kind of situation??  I don't know.

I do know that we would appreciate all the prayers we could get right now, that Ansen's doctors will figure out what he has going on, so that he can on the right meds and eventually get home.  Also, I could use some prayers that my incision wil heal up.  I am having TONS of wound fluid coming out still, which is not good at all.  Tomorrow at my next appt, we will probably have to start looking into other issues that might be causing me not to heal right  Sometimes it feels like nothing is going right at all for us, but then I remind myself that Ansen and I are alive after all this...and every day I get to go to hospital and snuggle him close to my heart, and my heart bursts with joy over the sweet miracle of him, regardless of all the bumps in the road.     

1 comment:

  1. I'm so sorry for all you are going through, especially the comments from your family member. I pray that God will heal the relationship and that this person would come to see the immeasurable value of Ansen's life. God bless you for sharing your journey with the world.