Leo Clement

Well, thank goodness that's over. Leo is home and almost back to his normal mellow self. He was a trooper for the surgery; breathing on his own again with only the LMA tube giving a little assistance. He's setting all kinds of new trends at the 'Hitch. The PICU experience was interesting.  It had a  more laid back vibe then the NICU, and Leo had a whole room with even a picture window. But no place can compare to home.

Leo came out of surgery and he is spending the night in the hospital in the PICU (pediatric intensive care unit).  His shunt replacement went fine although he is in a grumpy post-op state (as he should be) and when not on a few pain killers he is taking some milk. PICU is quiet.  We didn't think it would be given that so many tragic cases go through there, but it's more mellow than the NICU (neonatal intensive care unit), at least now.  Maybe kids aren't going out and hurting themselves right now to scare their parents.  Thank God! Anyway, as far as Leo's parents are concerned our nervous temperature is down considerably from NICU days but it is still a trial to watch your baby go off to surgery.  On his release forms I always want to sign "take me" instead of my signature.  Nevertheless, we handed him over to Dr. Durham and her professional team knowing full well they are damn good at what they do.  During the surgery we sat on the wonderful cafe pa...

Bada Boom. The 'Hitch gets things done. Leo is going in for surgery tomorrow at 10:00. We decided on least invasive measures first, so he will be getting his shunt revised. They will switch out the valves, changing his meduim flow valve to an adjustible one. Also during the surgery they will check that all the other parts of the shunt are working as they should be. The idea is that with the magnetic valve they will be able to adjust it as needed according to his fluid pressure. The medium flow valve just doesn't drain fast enough to keep up with his CSF production. He makes about 200cc of fluid a day. That's like one can of cola!!!

It's amazing how many times during one's daily interactions the brain comes into conversation. Almost as much as God. We all know we take the Lord's name in vain. It's a fact of life. I've been known to exclaim, "Jesus!" in annoyance just as often as the next person. Same goes for the brain. "That's retarded," or "What am I? Brain dead?" Etc, etc, etc. "Playing with a half a deck" was always my favorite. Kind of ironic now ain't it?

However you say it, it's on our minds...And very literally in Leo's case. Another run to the 'Hitch today determined that our little dude is not assimilating the fluid fast enough. The neurosurgeon was able to tell this by checking the shunt. She inserted a needle into the valve on his head and drew the CSF through a clear tube into a syringe. Since she got a full syringe of fluid, that proved that the valve works; then she held up the tube to see if the fluid would drain. It's a one way valve so if the fluid went down in the tube, that proves that the shunt in indeed still working and not clogged. And it did drain so the shunt is fine. However, the problem is that the fluid is still building up in his head.

And it still sometimes seems like way too much. Today I brought Leo back in to the hospital for a consul with the neurology doc who specializes in seizures. Lets cover all the bases folks. What else can go wrong for these already severely compromised children? Most of them develop seizures they tell me. Some are severe and require medication, some are subtle and not a concern. Concerned? Who me?

since Leo's arrival, since he blew our minds.  We are starting to feel a turn of perspective.  The days and weeks we spent asking God to wake us up from a bad dream seem like ages ago.  Meanwhile the air is cooler and I don't remember when Fall decided to come.  Somewhere in the turn of events with Leo being home the seasons have turned too.  The weather seems more dramatic and restless.  Driving to work the landscape is not so settled as it is in Summer.  It is dying and forces unseen are at work on the trees the leaves and earth.  Forces unseen.  That is what all of this has felt like.  Our hearts pulled in multiple directions while a steady force rises.  Gotta hand it to Leo, he has altered our perception of what's expected.  Can't even watch the leaves change without listening to the stirrings in our hearts.  The power our kids can grip us with is profound.  Or is it the power of God?  Kids are miracles, a co...

"The Special Mother" by Erma Bombeck Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew." "Forrest, Marjorie, daughter. Patron Saint, Celia." "Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity." Finally he passes a name to an angel and smiles. "Give her a handicapped child. "The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel." "But...

I was thinking about you all today, all seventy-plus of Leo's faithful friends.  All of you have been very supportive of us so more thanks are due.  I remember telling Father Caleb, who was with us everyday at the hospital during the worst hurdles, that I didn't know what it felt like to live completely on people's prayers.  Now I think I got a taste of it.  When all the lights go out for us parents in that moment you find a small light in knowing people are there with you heart and soul.  Thank you all!  Daily life has wiggled it's way back and we are poking our heads out of our hole.  We have emerged with many unanswered questions and lingering fears.  I think it's because we have been barraged with the whole spectrum of what can happen to Leo in the coming months/years, both good things and bad.  We don't know what to do with it.  Meanwhile life goes on and nothing seems to be happening to him except he performs all the normal baby t...

So the past few days we have gotten a glimpse of what life with Leo might be all about. As newborns go, he is pretty much what parents would wish for. Sleeps through the night, doesn't cry too much, and is pretty happy to just hang out while the daily DuMoulin life ebbs and tides around him. He has also graduated to being a successful breastfeeder, which I am very grateful for! He made his debut visit to church on Sunday and was a model parishioner. Of course, I have been a parent long enough to know not to brag too much about this and that, since your kid will almost immediately prove you wrong. So enough of that.

Dear Kathy and Doug, We owe both of you heartfelt thanks for being true Christian servants during our ordeal.  Thankfully you were an arms reach away and always willing to take Nika on a whim, cook incredible food (good enough to send Anna into labor!), and throw possibly the best four-year-old birthday party this side of the Connecticut.  This was all done while Kathy was recovering from major surgery and Doug was into some serious home decor projects.  Now Doug is desensitized about the pumping thing too, so we all gained some perspective :).  We don't know how to say it better, but all your prayers and hugs and tears mean the world to us.  Thank you.  We love you.  Safe travels across the border.       

After about half a day of paper signing, talking with doctor after doctor, and making quite a collection of business cards, we were free to go. They did cut through a lot of bureaucracy, since in our case it's kinda redundant to make us watch the movie on SIDS and lying the baby flat etc. Plus they were forced to look the other way as Justin carried Leo out in his arms. (They have a policy that the baby needs to leave in a carseat.) Leo bent a whole lot of rules during his stay in the NICU. Nevertheless, I think the world of those doctors and nurses who really tried hard to help us in every way, and were sincerely compassionate and caring to us. Leo's PCP is even making a house call to us next week! Just like in the old days. Anyway, Leo loved his carbed, and Nika loved having company in the backseat. We overheard her telling him, "Don't worry little brother, I'm right beside you." Our little family is complete now, and it feels very right to have him home. ...

Spent a peaceful and quiet evening in Leo's quarters, just Anna and I.  It's been a little over two weeks since we found out what was happening with Leo.  I don't think we have shared a laugh together since that time, for obvious reasons, but tonight was a release.  We remembered this random FarSide cartoon where a pilot is fumbling for a switch that says "wings stay on" "wings fall off".  Remember that one?  It reminds us a bit of the irony involved with the design of a thing and how it should not be an option to self destruct.  I guess you had to be there, but even the doctor told us a little black humor is allowed. We are all set to take Leo home with us tomorrow.  Lots to go over before he is discharged.  We will probably have a visiting nurse come every day to check on things.  Leo's doctor, who is genuinely a compassionate person, offered to keep in contact and even gave us his home number!  Rare for such a thing to happen especia...

This is a quick update on the shunt surgery.  Since it has gone in Leo's eyes have cleared up tremendously.  He has beautiful stone-cut blues like his mother.  The tightness in his face has gone down now that the pressure is off.  We think he is looking a lot like his sister did as an infant, only with a very funky head.  Today I trod new territory rigging up his "car-bed" for the likely occasion that he will come home with us towards the end of the week.  Car-beds are awkward things and the hospital rarely uses them, but they just happen to have one in storage.  Thank God.  If they didn't have one an ambulance ride home was our second choice!  We are learning more about hospital policy discharge procedures and all that.  Leo is looking more and more boyish and cute and fascinating.  But then again most parents think their kids are baby models.  He has picked up his eating now 48 hours after the surgery, but he still takes much...

Not in a really bad way, just another shock on top of a series of shocks. Like in an earthquake. The first one is the most damaging emotionally, all the other ones just keep rocking you until you just expect them. Perhaps at some point, all horrible situations turn into resignation and acceptance. My tears are dried up at this point, maybe because a person just can't sustain a constant state of despair and misery. After a time, things need to equalize so that the body can keep functioning. And function I must. Grocery store, seeing to Nika's daily needs, laundry, and pumping. And eating. It's amazing how in the most dire circumstances, the body still needs food. It's almost outrageous. (Thanks though everyone for the casseroles etc. Haven't had to cook a meal in over week!) The latest shock in the long line of the Leo induced earthquake is the radical changes from the shunt. I can't even recognize the stretched and unearthly face of the son I've gotten used...