Just a quick picture of our sweet boy after surgery - actually its a still from a video we we were taking of him.
He's a bit taped & wired up & they shaved off some of his pretty hair - but he is beautiful still.
Sorry we haven't really been keeping everyone in the loop. We've been totally without techie tools the past few days. No fancy phones or cameras or laptops until super recently. I don't think we totally totally thought thru the fact that we wouldn't be home for quite awhile. So thank you dad for letting us steal your laptop :)
Okay, so here is whats going on with our little son.
All in all, we are really encouraged today. Its nice to have yesterday behind us & to be over a little hurdle. It seems as though everything that they've found with Isaac - both things that we were expecting & things we weren't, are so far on the better side of what they could be. The one major thing we still don't know much about - & probably won't really realistically for awhile is how the fluid in his brain is going to affect him as he gets older - we'll just have to be patient while he heals & grows.
So
{somewhat} quickly & simply, so far this is what is going on:
-the hydrocephalus
{fluid in brain} is slowly being drained now. One of the surgeries yesterday - the latter one, was putting a VAD just under the skin on top of his head.
{from what we can understand} its about the size of a large coat buton & they are going to manually drain the fluid from there for now. That was kind of different from what we originally had talked about. Originally they were going to insert a shunt, which is a tube that connects from his head down to his stomach & his body would absorb the fluid that way. The reason this didn't happen was because...
-Isaac was actually born with an imperforate anus, which just means that his little bottom hole isn't there. So that was kinda shocking, but actually made sense with some of the ultrasounds that we had seen problems with his bowels in. That was surgery number one, & it went really well, but because all of his tummy area is kind of tender right now so they're not wanting to route any tubes down there just yet - hence the VAD. So back to the bowel stuff - right now they have just re-routed everything temporarily to a little sack on the outside of his tummy, but in the next few months they'll do another surgery & then another or two over time & can get everything all fixed up for him & working. It apparently isn't a super uncommon thing...& surgery went really well it seems like. We're still waiting to make sure everything healed up & is working as it should - but it sounds like it all went really well!There could have been a lot more complications with his kidneys, bowels & intestines, but all of those are looking okay :)
a few other more minor things that we'll just have to watch are:
-his missing radius bones
{one of the two bones in the lower arm, that connect from the elbow to wrist} he is actually missing both of his thumbs too. it's actually really really cute looking having his hands curled up. & we kind of didn't notice the thumbs until a nurse told us. we talked with an orthopedic surgeon & the only action we're taking right now is getting him little stretchers for his arms/hands & in a year or two they can do a surgery that takes one of his fingers & makes it an opposable thumb, so he really should be able to do just about everything with them that anyone else would.
-his kidneys are fused together. & both on the left side. super bizarre, but they're functioning just fine! so we'll have to have them checked out every once in awhile just to make sure things are working right, but they're great so far.
he has a touch of jaundice, so we've been saying he's in his tanning bed all day today. they have a little pair of goggles for him, too.
& he's got scoliosis in his upper spine...like his daddy :)
he's been pretty sedated for a lot of the day today still - recoving from his big day yesterday.
but even so it was our best day with him yet, even though we didn't get to hold him. he is so strong & so many people have been holding him up in prayer, its no wonder he's been such a little trooper - & he's getting some good books read to him in the meantime :)
i know everything is crazy/technical but we know that hardly anyone really knows what's going on yet. so that is basically it!
we're still believing that God gave us this little man to take care of & love & He can still perfectly heal his little body. but no matter what, he is perfect to us.
Love,
the Colemans