CT scans paint a thousand words...

Like many of you, before we learned "J" had it, we'd never heard of craniosynostosis, much less the procedure that corrects it. Neither have we known or seen anyone that bore the scars from this surgery. Now, after going through what we have with "J" over the past two months, we feel we can almost "diagnose" which kids have pre-surgical craniosynostosis just by looking at their heads.

We've found that folks understand better what "J" went through when we show them the CT scans (aka "CAT scans") of his skull, before and after surgery. We certainly understood it better when another family showed us scans of their son who went through the same procedure years ago. So, here you go....

Before surgery		After surgery
	Top of skull
	Front of skull
	Right side of skull
	Back of skull
	Left side of skull

You'll notice a tube that wraps around and protrudes out the back of the skull in the "after surgery" scans. This tube served as a catheter to drain fluid build-up. The "after surgery" scans also show only the top half of "J"'s skull. (We wouldn't want you to think the surgery removed the bottom half!)

Again, to know why "J" needed this done, see this link.

The CT scan that blew me away was the one showing the top of "J"'s skull after surgery. To be frank, the skull looks quite shattered. One visitor remarked how we expect "after" pics to show marked improvement over "before" pics. But it hardly seems that way looking at the CT scans above. In fact, what the surgery basically did was fracture "J"'s skull....and quite violently, I might add. Over time, however, these fractures will eventually fuse....bone matter filling in man-made gaps to where "J"'s skull should eventually be like any normal person's skull.

All of which gives me pause -- we can certainly marvel at these wonders of modern medicine. Yet such modern medicine is still utterly dependent on forces beyond itself. "J"'s surgery does no healing. Once done, it must humbly step aside and call upon God-given properties, present inside even a tiny infant's body, to do the delicate, wondrous repairs no doctor can. Without these healing attributes, cutting up a baby's skull makes no sense. In other words, our only resort with conditions such as craniosynostosis is to take the body "backwards" by destroying tissue and managing the pain that comes with such destruction, forcing the body to mend itself using amazing mechanisms not replicable by any human. Same with vaccinations, where we inject harmful entities into ourselves in order to summon unbelievably wonderful anti-bodies and a hardier immune system for the body. So, we marvel not so much in the surgery, impressive as it is, but rather in the restorative mysteries that take place afterwards.

How Great Thou Art!

Day 1 @ home

We've been home less than 24 hours and already "J" has had 2 major diapers...more than enough to require a bath. It was a bit surreal giving him a bath - his personnality is back to normal and everything else seemed the same...and then you catch a glimpse of that giant incision on his head...and you remember how good our God is!

During our stay at Children's we met another family whose 1 1/2 month daughter was admitted due to a seizure or heart attack or stroke (don't remember exactly which one, just remember being shocked that it happened to so small a baby). I don't know their names, but when you're in ICU together, introductions are such minor details. You talk about "syndromes" and "issues" and "conditions" and "treatments" and "doctors" - never names, or what we do, or where we're from...none of that means anything there. So, i don't know their names and they don't know ours... Last we saw them, we were in the elevator together, and they asked what happened to us since we weren't in the ICU anymore. We replied that we had been moved down to "RECOVERY" - yeah! After they congratulated us, i asked them about their little one and when they were expected to move down to recovery. They said that their daughter/neice is in a coma and will probably not recover. I didn't then, and i don't know now, what to say...

As you celebrate Christmas, as a gift to us, please reflect on God's goodness...

Day 5 @ Children's

The swelling has decreased tremendously. Ready to go home!

"Here's to my last day at the hospital....cheers!"

"Now for a 'beauty nap'..."

Taking the IV needle out (oww!)

Heading home....yay!

What a contrast in less than 48 hours!

We left Children's around 11 am, picked up "B" and Grandma, and headed home. A big snowstorm, bigger than what hit us a few days ago, was scheduled to hit around 4 pm. It hit a bit earlier, so now we're walking in a winter wonderland. Amidst it all, we're grateful "J" is back home at last!

Many, many thanks to all of you who visited, called, emailed, and expressed your care for "J" and our family during this challenging time. God bless you all!

Day 4 @ Children's

Playing with "B" and Nai-Nai
"J" woke up in the night a few times, making it hard for us to sleep. The past few nights, for that matter, have been erratic sleep-wise for us all.

The drainage tube behind "J"'s head was removed today....took all of 2 minutes. He cried a bit, as the nurse said it'd be a bit painful. If "J" can feed and relieve himself like he did prior to surgery, there's a chance he may be discharged tomorrow. He slept on one side most of the night, which caused one eye to swell back shut, while the other eye was less so.

"B", Grandma, uncle, and auntie all came by again to hang with "J". "J"'s eyes are much better now. All the docs and nurses agree that he's ready to go home by tomorrow morning. There's a snow storm supposedly headed this way tomorrow afternoon, so the timing is good.

Day 3 @ Children's

The doctors said the swelling would get worse today before it'd get better. Hard to fathom, but sure enough, they were right. Our sweet "J"'s head ballooned to other-worldly proportions. His move from ICU into the regular recovery ward surely meant "J" was on the right road to recovery, yet judging from his appearance, it seemed like anything but.

It boggles my mind how the pics below, taken just two weeks apart, are of the same little boy....and yet they are....


"J" continued to cry and moan, pitifully unable to see anything through his over-swollen eyes. Poor little guy....has absolutely no idea what's hit him. It was all we could do to hold back tears during this trying time.

The much-ballyhooed big snow finally fell overnight. Early morning found cars stranded, schools closed, workers staying home, kids playing. But here at Children's, all business....and thankfully so. The staff at Children's has been excellent. "L" and I ventured out carefully, back to my brother's place for a short while, but most of the day was spent with "J". The snow made for a much-welcomed serene backdrop for "J"'s woes.


Over the course of today, "J"'s swelling subsided. By evening, his eyes could open just a bit....first the right eye, then the left. Not much, but just enough to see and track us. As time passed, he would let out occasional grunts, even a slight laugh. He started playing "pai-pai-shou" (clap-clap-hands in Chinese) with us as well. It was a remarkable improvement from just this morning. Although his still-swelled head is still not where we'd like it to be, we are massively encouraged.


Lord, look after Your little boy...

Day 2 @ Children's

"L" called me this morning, informing that "J"'s head had swelled significantly overnight. Seeing it for myself, his head appeared almost twice the normal size. One eye was puffed nearly shut. Again, not unexpected, as we were forewarned by doctors, nurses, and families who'd gone through this before....still, when it's your child and you're so used to him looking one way, it still shocks to see him appear so different. Our sweet "J" was almost unrecognizable. It was very heart-breaking.

Contrasting our ache for "J" was knowing that today is "B"'s birthday...she's three! I brought "B" and my mom over to Children's to meet some families from our small group, who brought a cake and presents to celebrate. Later, several families from our home church showed up with cake and presents of their own. During this time, we brought the grown-ups and older kids to see "J". Children's Hospital only allows 3 people (over age 12) into ICU at a time, so we made a lot of visits. We were so blessed by everyone who came. We were worried that "J"'s surgery would overshadow "B"'s birthday, but that was not to be, thanks to such considerate, caring friends. They made sure both "J" and "B" got love. Thank you all who came, as well as those who called and emailed your concerns, thoughts, and prayers, making today so special and easier for us to cope!

Many of our visitors were able to bring their children, since their schools were closed due to impending snow. The snow never came, but it's forecasted to come tonight and tomorrow. We'll see...

Though no visitors under 12 are allowed, "B" was an exception, being a sibling. Her comment upon seeing "J"? "Owee. He got a big boo-boo. He need a big band-aid." Out of the mouth of babes. :-)

"J" was moved out of ICU around 9 pm into the regular recovery ward. We went back my brother's home to gather some things and celebrate "B"'s birthday for a 3rd time, with her grandma, uncle, and aunt. "L" and I headed back to spend the night with our "J". His head has puffed up more. Both eyes are swollen completely shut. He cries and cries, with pain meds his only source of comfort and calm. It's been difficult to take. We really, really miss "J"'s old head....his bright, wide eyes....his infectious giggle. Now there's none of that. And even though it's been less than a day, it seems so long since we've seen/heard them.

We're settling in for a long night....but we also know that we don't want to be anywhere else at the moment.

A different kind of journey....

Our family is now embarking on a different kind of journey today....one that's not taking place overseas, but rather here in Seattle.

Our baby son "J" went into Children's Hospital for surgery early this morning. The surgery will correct a condition he has called craniosynostosis. You can find out more about craniosynostosis here.


Top of "J"'s head, day before surgery
Yesterday afternoon was spent at Children's in pre-op appointments. It all went much longer than expected. We decided it'd be best to spend the following night at my brother's house, since he lives close to Children's.

We left "B" with grandma, uncle, and aunt as we checked into Children's for surgery this morning at 6:15 am. After some anxious waiting in a prep room, we put our sweet "J" in the arms of his anesthesiologist, and they disappeared into the operating room at 7:30 am. That was a rather emotional moment for "L" and me. The hospital gave us a pager through which they contacted us every hour or two to give us updates.


A slow 3-4 hours followed. During that time, we contributed blood samples for a research project to determine the cause of craniosynostosis. We ran a couple of errands to get our minds off of what was happening to "J". Finally, around 11 am, after much anxious lounging in the waiting room, we met with the craniofacial surgeon who reported to our relief that everything went well.

"J" was moved to the intensive-care unit. We got to see him around 1 pm. His head was swollen a bit, but not as much as I'd expected. An angry, ear-to-ear scar zigzagged over the top of his head, gooped with medicine. A tube ran out from a hole behind his right ear to drain fluid build-up in "J"'s head. Though we expected all this, it still shocked to see it on our lovable "J"....I don't think any amount of pre-preparation could've made that easy.


It was hard to leave "J" by himself in ICU, but there wasn't much we could do there. So we went back to my brother's house to eat dinner and take care of more errands. My mom, brother, and sis-in-law all went back to visit "J", after which "L" stayed back to spend the night with him. Only one parent is allowed to spend the night at ICU.