I finally feel like I truly am standing in the storm. It's today's storm though and seems to change so much day to day. When I first went up to the NICU I didn't feel a connection with the other moms. I couldn't possibly be joining their club of visits, pumping, holding your baby and then going home, but alas it's looking that way. Here's the basic chronology of events so far: Day 1 fed great, looks better than expected, Day 2 he'll probably come downstairs with us on Day 3, Day 3 he can't come down with us, but will get discharged on Day 5 with me, and here we are at Day 4. They're pretty sure he won't be discharged with us tomorrow. So here we are in this ever-changing storm. With his heart condition, which they've termed a blood mixing disorder, there is too much blood flowing to his lungs. This makes him tired, makes eating a challenge, makes his tiny feet and hands cold and with poor circulation, makes him produce less waste, which all affects his ability to thrive on his own. Right now, we're weighing him before and after every feeding to see what his intake is, I pump after I nurse him and then they give him that bottle. The problem is that he's just so sleepy from his heart having to work extra hard, that sucking and swallowing are just a bit too taxing. There really are no clear answers. It's very wait, measure and see at this point. Right now, we just need him to eat and be a little more alert, so thank you for keeping him in your prayers. There is truly nothing worse than watching our beautiful, perfect baby boy struggle because of a heart condition he doesn't deserve.
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