And now...

Sonny is doing well on his feedings again.  He's back up to 32ml every 3 hours and has been learning to eat from a bottle!  He does awesome at it if he's awake enough, and has finished his bottle a few times in the past couple days without needing any to be put in his nasal gavage!  What a big boy he is becoming!!  His nasal cannula is gone, except during feedings, and you can see so much more of his adorable face!  :)

Just shy of 6 weeks old  :)

He has been doing so great overall, considering what he's been through, and now weighs 3 lbs. 12 oz.

However...we were informed yesterday that the mutation for cystic fibrosis came back abnormal on his newborn screening.  It only tests for one mutation and not two; only having one means he's likely a carrier and probably won't ever have CF.  Having two (one from each parent) would put him in the "very likely to have CF" category, but sometimes they still end up only being carriers.  We won't know if he has CF or the second mutation until he's about 6 months old.  Definitive testing includes a sweat test, and since newborns don't sweat enough to do the test...we wait.

I'm trying to convince myself that I'm overreacting by being really upset by this news, but I just can't shake the disappointment, sadness, and anger.  The nurses assure me that I'm actually not overreacting; that they, too, would feel what I feel.  I've said it before, when I was still pregnant, and I'll say it again: my child having a disorder or disease won't affect how I feel about him, but I just want it to be easy for him.  I know it's not about what I want; the hand has already been dealt but we can't look at the cards for at least 4 more months.  I can't help but feel like it's really one thing after another and I've heard that's how it goes with most preemies for awhile.

I'm told by almost everyone I know that they know someone who was a preemie and they're just fine and perfectly healthy.  Truth is, most of them end up being just fine.  But the other truth is many of them have life-long complications.  Sonny having the mutation obviously isn't due to being premature, but it's just one more thing piled on the already tall heap of crap this precious boy has had to endure in his 6 weeks of life.

I now know what my mother meant when she told me she wanted to fix it and hated that she couldn't when I couldn't get pregnant and again when I had pregnancy complications.  I would do anything to fix my son---and feel so helpless that I can't.  I didn't cause these issues, but still feel responsible.  It's the worst feeling in the world, next to watching him squirm and cry because he's hungry and hasn't eaten in days, without there being a damn thing I can do about it.

Him ending up having CF isn't the end of the world, but it sure feels like it.  It feels like he can't catch a break, like so many others get to.  His destiny has already taken him along the bumpy road and I can't help but wonder when the pavement will begin.  And sadly, it may never.  How ironic that the saying on the front of the journal my mother purchased for me after I got pregnant, the one I used as a pregnancy journal to write to the baby each week, is "There's no such thing as an ordinary life..."  This has been true from the beginning with Sonny: before birth, through birth, and after.