Ups and Downs

We've had a rough couple of days.  Immediately after my last post, Wilson perforated his bowel again- basically blew a hole in his intestine.  The pediatric surgeon isn't sure if it's the same spot or a new one.  We were so convinced that he had healed his last perforation all on his own!  We still are, and therefore hopeful he'll heal this one.  The surgeon had to do another little surgery in which put a little drain (it looks like thick rubber band material but has a wicking quality) in one side of his abdomen by his hip and out the other.  This was very effective last time, but this time the free air in his gut (the air that had escaped his bowels upon perforation) is up by his diaphragm.  The surgeon did want to aim the drain too close to that location because he'd have to pass over the liver.  Even touching the liver could make Wilson bleed out.  It was very scary waiting for Wilson's surgery to be over, but he made it through again without needing any blood or lots of time to recover.  This free air in his gut also effected his previous improvements in breathing.  The space the free air is now taking up is less space for his lungs to expand, so Wilson had to go back on the oscillating ventilator.   I'm confident he'll make a comeback in the oxygen realm.  We're much more worried about the success of the drain and his ability to heal his hole in his intestines.  If he can't heal it on his own or if some of his intestine has died, the necessary surgery involves cutting him open and sewing the intestine back together or bringing two end of the intestine to the surface of the skin for a bit to drain and then sewing him back together.  However, he must be 2lbs in order for the surgeon to do the surgery.  He's only 1lb 10oz, and some of that might just be from the free air in his gut.  Please pray for Wilson  (and all the triplets, but especially Wilson).  He's so fragile.  Sometimes I think he's in pain, even though they have lots of meds for that.  He often holds this soothing pose (below), and just cries and furrows his brow.  He also bangs his open hands or closed fists on his ears.  It makes me cry.  I'm so glad that their skin is maturing a little bit because now it's starting to help if I put my hand on the top of his head to soothe him.

Wilson, April 16

Luke has had a rough week, too.  His belly has been so big since last Friday that he's been closely watched for a perforation.  In other words the air in his intestines is building up so much that this belly is swollen, you can see his inflated intestines through his skin, and he's miserable.  After one week of waiting for him to have a huge fart or poop explosion, we could wait no longer.  They gave him a barium enema yesterday to see where he was blocked.  (The barium is visible on an xray, so they watch the barium travel through the intestines in an effort to locate the problem.)  The enema was risky because the enema itself could cause a perf.  Luckily it didn't, and they could confirm that he was just very backed up with merconium.   The barium enema even stimulated some pooping, but he has a lot more to do.

Luke, April 16

Pooping and farting may never be funny to us again.  It's life and death with these little ones. 

Ella is doing well!!!

Ella, April 16