He is doing better as far as gunk in the lungs go but he has been on pretty much constant 100% oxygen since I last posted. Pressure is still very high as well as his respiratory rate. Today we started a second round of steroids. We are hoping this gets him back on track. If it does not then we are getting an updated echo done to make sure his left ventricle is pumping enough blood to his lungs. If that is ok but his numbers are still low he will be getting transferred to Vanderbilt to get a trach tube inserted. This, amazingly, is not freaking me out. We had a very lengthy discussion with Dr Palmer about Drayke's long term care. Given that he is now a more than full term baby he has to start using his mouth and throat the way it is intended and the trach will help accomplish this. Also, we can bring him home on a ventilator installed this way. His xray was pretty ugly from 8/2 showing lots of scar tissue in his lungs. It may just end up waiting for him to outgrow the damage. Needless to say, we are REALLY hoping the steroids work again.
On top of our own problems I spoke to one of the former NICU moms today. Her son is doing well but the mom who is my age and had invitro and ended up with triplets lost one of her boys a couple of weeks ago. His bed was next to Drayke's and when we noticed his area was cleared we thought he went home with his other 2 brothers. This hit really close to home. The parents in the NICU start to become family, expecially us who are in here for the long term. When I heard that Jared had died I sat in the cafe and burst out crying. The news really has effected dad as well.
On a happier note I brought in some items from little ones at home crib. Drayke LOVES his Rainforest Waterfall Peek-a-Boo Soother. He gets quite grumpy when it is not on. I also took in the 3 stuffed animals I had bought him in January: a frog, hippo & gator. We last night his nurse decided he needs more stuff to look at and jury rigged a mobile out of medical Q Tips and silk tape. The result is great and Drayke was looking at it this afternoon and smiling.
And of course I had to have a new pic of the love of my life. I cant believe tonight he weighs 6 pounds 10 ounces!
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