So frustrating!

I have seriously never felt so frustrated and helpless in my life.  Things had been so great for the last few weeks that I got accustomed to hearing "He's doing great!" every time I called for an update or showed up to a visit.  Since he got sick with this infection last week, things are just going back and forth.  Unfortunately right now they feel like they're going back.

So he had a renal ultrasound yesterday to look for structural issues that may have caused his UTI.  They found fungus balls in his kidneys, so they are waiting for the anti-fungal meds to break up the balls and will keep him on the meds for 28 days after they disappear.  To make sure other organs aren't infected, they did additional ultrasounds today.  So far his liver and eyes are fungus free, and though the final report on his heart isn't back, the preliminary results show that he's ok there as well.  Also, they say his kidneys look better today than they did yesterday.  This is all great news, so I'm frustrated and being so down about all of this.

The thing that bothers me is when he has problems with digestion.  He had been tolerating food since they started feeding him again on Sunday.  Unfortunately I just got a call telling me his belly is swollen, and they suctioned a little blood out of his belly when checking for residual food.  This means we're back to square one on that front.  They've stopped his feedings, took some x-rays, and are venting the gas out of his belly with a big tube.  So far it doesn't look like infection, it just looks like his belly is full of a lot of air.  He hasn't pooped since they started feeds again, so things just don't appear to be moving through.  They think it's the high-flow oxygen that is filling his belly--basically the same problem he had when he was on CPAP.  Unfortunately the cannula is the end of the road, short of breathing completely on his own, so there isn't much they can do but hope he starts digesting.  They're going to run more blood labs to look for signs of infection just in case, and will possibly give him a suppository tomorrow.  This is the exact same thing that happened the last time he got an infection, and the suppository (and transition to the cannula) is what helped.  I pray that it is all this is.  It's just so hard to think that my poor little baby is starving.  It makes me want to punch something!

His platelet count is also low this evening after it had started to rise with their last tests.  If he drops much lower he has to get a platelet transfusion.  He had to get some extra blood again today to make up for these tests.  He was so pale when I saw him today, and he was requiring extra oxygen.  Hopefully this new blood helps him again. 

The last crummy big of info is that he got another eye exam today and he has stage 1 ROP.  This is the eye disease that happens with preemies that can lead to blindness (though that is pretty rare these days).  75% of preemies with his birthweight develop it, so it's common.  Because his last exam came back fine, I didn't really study up on ROP in effort to not scare myself if it wasn't necessary, so I wasn't really prepared to hear that now he has it.  Basically ROP is abnormal growth of the blood vessels that come out of the retina.  Severe ROP is where the vessel growth is so bad the retina can detach.  There are 5 stages of ROP, with 1 being mild.  He may progress to further stages, or it may get better on it's own, which is likely.  Some estimates put 90% of cases resolving on their own.  If it hits stage 3, they'll perform laser surgery to stop the abnormal growth.  He is no longer at risk once the blood vessels have completely grown out, which happens when he hits about 40 weeks.  We only have 7 more weeks to go, so here's to praying it doesn't get worse!  The outlook is pretty good, so I shouldn't panic yet.  It's just when you pile this on top of everything else that's going on, it's so overwhelming.

I wish I could go back to the days where they were saying he just needs to grow.  I wish I could make him better.  I wish he was still in my belly and we didn't have to deal with any of this.  Gooooooo.