Leo Clement

A year unlike any other.. A collision of chance, a cacophony of probabilities, decisions and choices entwined with fate.  Roped and hobbled by necessity. I don't think that we are the only ones viewing the coming year with no little amount of trepidation. Raising a glass to it is a dubious pleasure at best. Once burnt twice shy they say. Perhaps they should change it to, once burnt twice shy, and three times desperate. Another saying that is spinning in my head tonight is about drinking the bitter cup. It's something my dad told me, way back when we first found out about Leo. That also fits right into another saying that we Orthodox Christians say daily in our prayers. We pray for God to deliver us and save us from necessity. When I was younger, (Single, childless..) I never got this. Bitter cup? Necessity? Whatever! As the years go by we learn about necessity, either we learn or we stagger from one catastrophe to another.. Necessity. Something that kills us to do, and kills us...

Today our sweet little bug is 4 months! It's so hard to believe that its been only/already 4 months. It feels like years passing in a blink of an eye. Very fast and very slow at the same time. What can I say but that he holds our hearts in a very special way. I love him. And you know, I really feel that it's a stronger love then what a mother has for a normal baby that is born to her. Usually, once you see your brand-new baby, you have no choice but to give your heart to this little creature that was and is a part of you. I remember that vividly from when Nika was born, as if the whole world zeroed in on her tiny face, and nothing else mattered. When Leo was born, he arrived on the crest of a wave bearing all kinds of pain, heartbreak and fear. Also drugs. The c-section was so rough and intense that they filled me with a medley of narcotics. I'm one of those folks who doesn't even take sudafed and here I was stuffed to the gills with chemicals. I was so loopy that even ...

I am referring to my inner state, my spiritual state, throughout this whole ordeal.  When fear grips us so profoundly it keeps us in a half-state of being.  There are no mountaintop experiences (real or imagined) and the temptation is to allow that fear to become the norm as life slips by like a dream.  Where once there were many roads "out" (real or imagined), fear, or the memory of fear says "don't rock the boat, you've been comfortable now in this new state of fear" and it binds you to the event like a boat that crashes against the rocky shore again and again and again whenever the "inner storm" rages.  This is my all-to-human spiritual state these days.  But it isn't spiritual at all, it's just a replay of the same event crashing on the same rocky shores.  I need the storm, the rocks, the whole scene to complete the cycle of fear in me.  It's how I "deal" with a situation that is beyond me.  Unfortunately it is how I have ...

And this is Lia, she's 4 months old. Awww how cute! Etc etc etc. This is all that is needed to introduce a normal baby. Her name and age makes her who she is. A "special needs" baby? The name and age comes last. First it's usually a list of incomprehensible medical terms. My baby was born with this and that and oh yes, his name is Leo. This has really been bothering me lately, that my son is defined by some ambiguous medical label that immediately alienates him from every normal reaction. It bothers, because to me, he is who he is. A sweet, happy baby that tries his hardest to make us proud. Not some kind of medical anomaly, or a statistic. He is unique and mysterious, just like any other infant just starting out in life. Lately we have been talking more and more about his diagnosis and the scans that they have taken of his head when he just a couple days old. It all seems like some kind of misty nightmare that lurks in the mind; strange and surreal. Did it really ha...

and so does our baby boy.  I was told this week not to give up on the blog.  It will serve as a documentation of how much our lives have changed with Leo.  Usually change is subtle.  By the time a season has passed, like this sleepy Fall, I cannot remember what I did on those many golden days.  Winter is here and I am in survival mode and wondering what it felt like to be free, warm, less heavy hearted.  But really I was on the edge for most of it.  Sometimes I would like to let people crawl into my space just to feel what it's like to never feel at peace about your son (or daughter).  Peace comes in degrees.  Nothing is taken lightly.  The fact that Leo is incredibly "alive", meaning, he feels this world, breaths it, fights it, and loves it, is a miracle.  Lately he has taken over our attention from our daughter who demands attention all the time (because she is so cute) but we can't take our eyes of our little boy wonder.  Hi...

 What can I say, except that Leo is fitting into our life as if he was there all along. And sometimes I feel like I have already met him and have known him and about him my whole life. Are we destined to have the babies we have? I've had some really strong and crazy feelings of deja vu the past couple months.. Or is it self-fulfilled prophecy? I don't get it, but at least I know that I don't. Life is one big giant mystery as far as I'm concerned, and Leo is the biggest...though he doesn't act like it!  Can't believe he is three months old already! Nika spends time each day making up songs about her "little, big, baby brother Leo," and though I still feel sometimes like I am in a daze, there are more moments of clarity. And the best part is that our little bud is doing awesome. Growing and giggling, he makes us cry and laugh at the same time. Next week he has his consul with the geneticists and a Well-baby visit with his PCP. I'll let you know how i...

Danger! Red Alert! That is a restricted area! One that I promised myself I would never go...Well I'm wearing my bio-hazard suit so perhaps the damage will be minimal.... What if they were all wrong and Leo's prognosis might be better then the they led us to believe? What if after the fluid pressure was relieved there is more brain tissue then the scans showed? What if through all the prayers a miracle happened? Can you imagine being in a place where you are wishing for just some brain damage? Not just wishing, but feeling as if that would be the most FANTASTIC thing ever? Whoa. Anyway, why lately we have been toying gingerly with these thoughts is all because of our sweet, strong boy. He is doing so well. Every week he makes his physical therapist pleased. He interacts, giggles, smiles, and watches us. He plays with his hanging toys and moves his head all around, and even can hold it up a little. I am seriously expecting him to be able to hold it himself once his body is big e...

I always used to think masochists very weird and strange. I mean really, who would go out of their way to inflict pain on themselves? Well, as I have grown older and wiser (that's still up for debate) I have realized that this self infliction of pain is not so simple. First off, there are many different degrees and manifestations of masochism and it is not limited to actual physical pain. Sometimes it's a habitual emotional response to an outside stimuli. Like a sad movie that we watch over and over again just so that we can shed those bittersweet tears. Or thinking about something that made us mad before, just so that we can get outraged all over again.  Maybe it's supposed to be a way for us to deal with whatever issues we have and when we fail, we have to keep going through it again and again. Hopefully by the umpteenth time we will finally get it and change, before the cycle becomes habitual because once that happens, you're heading for serious trouble.

Today's blog is a bit of a tangent.  Since so much of this blog has touched on parenting I wanted to point you all to someone who I think got it right as a parent.  Watch him, study him, learn from him.  He's the master.  His name is Uncle Iroh from the Avatar cartoon series.  He is not the kind of character you would think is the master parent but if you watch the cartoon all the way through some profound themes emerge I want to highlight.  A heads up:  if you haven't watched the cartoon this might be a spoiler, proceed with caution, or better yet go watch it!

It's almost like Justin and I are stuck in this super advanced parenting class where Leo is the teacher, and our life is the classroom. Before Leo we thought we had credit we could transfer in from our previous baby/kid class, but we have found out that our old credits aren't applicable. Now we are in the crash course like it or not, and failing isn't an option. So we try not to sweat bullets and handle each new assignment he gives us with optimism. On our good days anyway. On our bad days, at least we have the notes we kept from previous successes to console ourselves with. Sometimes it helps.

When I looked at Leo in the early days of his birth I often had pity on him.  I had never experienced such a sense of loss gazing into his alien face wondering what he saw and felt and loving him at the same time.  That was an incredible trial and a lot of tears were shed.  Now what?  I am kind of a shell.  The person I thought I was before he was born has evaporated, but no new content replaced it.  I am a shell, a parent ghost hovering around Leo waiting to be filled with substance.  Or at least filled with the everyday things parent are likely to take for granted about their children, like growth, health, complex interactions, personality, and potentiality for deep bonds of love and trust.  All of that has a big question mark on it.  What will it be like raising my son?  He will grow, as he is growing, but I find myself wanting more from him.  We are in the vast ocean of yearning but will our desires be met?  I've written a...

Can you believe it, but there are others, many of them who are in the same boat as we are? And I have found them all on facebook. Amazing! Wondrous and tragic. I have read other blogs, looked at other pictures of children who are all ages, from angelic babies, to sweet and heartbreaking children and teenagers. I have become convinced that their parents are infinitely more wise, with larger hearts, and more courage then the average person. I guess it all comes with the territory!

You know the story of Peter Pan? Not the numerous Disney versions, but the real one. Actually I got the real story read to me in Russian when I was a kid. The stories, the characters, seemed so tangible to me, so bigger then life. When you're little, you don't think about the meanings behind the events, just the events themselves. When young you know the stories only through your emotions, and then as you get older, suddenly something kicks in, and you start to see the stories in a different way. Take for example, Captain Hook. In the original story, he's a real piece of work. An all around Mr. bad guy, and I remember hating him for all the trouble he caused Peter Pan and his lost boys. But now I realize, he was just driven by his fear. What was his fear? Time. Of course time was in the form of a nasty crocodile that happened to have swallowed a clock. Tick-Tock. Tick-Tock. Tick-Tock.

Today another coffee-hour discussion after Liturgy got me thinking.   Many people ask how Nika (our four year old daughter) is handling all of this.  I'm not sure except that she definitely knows something is different about Leo.  It all started in the hospital when she told us that Leo has (quote) "a little big head".  He is indeed our "little big head" like something from Dances With Wolves :).

Today Leo had a follow-up appointment with his neurosurgeon. His head has come down in size 6cm since the shunt revision! Wow! He looks really great, and I think feels great too! His eyes are much more open and I feel tracking objects and faces really well. I guess the trick right now, other then making sure the shunt keeps working, is helping his head mold in a more or less symmetrical matter. It's a good thing Leo's mom is obsessed with symmetry!

So many people have responded to this blog that it's humbling.  A certain topic came up today at coffee hour (the Orthodox Church's post-liturgy feast) that is gnawing at me since Leo's birth.  Call it a Christian idea or a revelation in the realm of parenting but actually our children are the pinpoints of our desires.  Any parent will have a checklist for what their kid should be able to do from the most basic at birth... sight, hearing, movement, to the the more abstract desires later on... will the kid be a heart surgeon, Olympian, teacher, etc?  The whole spectrum of desires, specifically tied to the new being, begins to surge in the parent before birth and grows to astronomical proportions as time goes on.  "Love" too grows in the same way but I am choosing to focus on desires because that is often the missing equation in trying to figure out why parents act the way they do.

Today during the physical therapist's visit, Leo was put through his paces. She had a whole list of things, 40 to be exact, of regular newborn motor reflexes and characteristics. Each one gets a check-mark (or not) and then a total score once she tallies up all the information that she observed. Although the final score for Leo really itself doesn't matter, the test was more to establish a baseline of development for Leo, and to find his strengths and weaknesses. Once this baseline is established, it will be easier to tell any progression and growth. Just since her last visit, she observed that Leo was doing a much better job of keeping his head in mid-line position. Before he would always keep it on one side or the other. She also determined during the exam that Leo definitely tracked her with his eyes and responded to sound. More specifically, to my voice. She had him on his tummy facing away from us, and she shook a rattle and made some noise to see if he would move his head...

Believe it or not, but at my worst (or is it my best?) the soundtrack playing through my head is the Eminem song "Lose Yourself." As crazy and probably out of character as it seems for most of you, something about the relentless rhythm and drive of this rap song highlights what this whole ordeal has been like for me. I once read a blog a long while back for another compromised baby with heart issues. I remember then the mom wrote a post about Rachmaninoff, and how for some reason his music was in her head. I remember wondering how she could be thinking about music at a time like that? Well now I know how. Because it invades.

I really don't know who was cuter this morning..... so hence all the photos. Might have gotten a little carried away, and couldn't decide which ones are the best, so you guys vote on that.  

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...

Here is just a quick update for all those waiting and praying for our Leo, before we go collapse in bed for the night. Leo was prepped and ready for surgery early this morning, but they only took him around two in the afternoon. We were there with him for most of the day today, just waiting and biting our nails. The anesthesiologist, a very nice British guy, came up around lunch to talk to us about the risks etc in Leo's case. Apparently because of his tucked up little chin, the regular breathing tube could not be used without lots of maneuvering and fiber optic tools. The anesthesiologist decided to use another breathing aid that isn't normally used for babies; a little tube that only goes down into his larynx, and does not do much more then blow some air down. Most of the breathing support would have to come from Leo himself. Typically under anesthesia babies need help to breathe, so the anesthesia team takes over the breathing. However the side effect of that is the newborns...

After all the words, what is Peace? Peace is a small light. One that flickers on the verge of breaking apart. No man can claim it. It has to do with life, something that is cherished and is gone. Peace is the thing longed for when everything screams for its opposite. Against all of that it demands all of our ears and most of all our hearts. for Leo.

Saturday today.  The hospital was a ghost town.  We were there for three hours in the morning in Leo's niche in the NICU.  There was a new doc who did rounds this morning.  I got to ask some questions about the difference between hydrocephaly and hydranencephalus.  In Leo's case they don't know which one came first but both seem to be present.  Basically, hydranencephalus is the the more destructive pattern for the brain but it doesn't always mean swelling.  Kids can be born with hydranencephaly without the larger heads and pressure in the brain cavity.  We don't know the stats but it seems that babies who have extremely abnormal brain development can function on their brain stem for a while, for months even years, because that part of the brain controls most of our involuntary reflexes such as swallowing, digestion, heartbeat, etc.  The future of these kids is very tenuous however without the presence of the "higher" brain tissue needed for ...

Update on Leo: Today we spent a good part of the morning with the occupational therapist at DHMC, plucking at hi-tech styrofoam pads. The biggest issue in Leo's care is purely positional. Because of the weight of his head, unless his neck is in a completely neutral position, he has problems breathing as his airways get restricted. We were trying to come up with some props and pads to try to make it easier for us to position him, and so that he will be more comfortable. He can't stand the pressure on the back of his head, and is only comfortable when his head is turned to the side. What we came up with is basically a little foam mattress with a dent in it for his head. After we put him in it, he slept for a full four stretch. I guess that means he likes it! In the afternoon we had another meeting with his doctor in the sunny courtyard outside the NICU. His doctor, George Little, is an amazing person. Very knowledgeable and compassionate. We couldn't have asked for a better ...

Last night was the beginning of our new schedule oriented around Leo.  We drove the five miles under a full moon to meet some dear friends at the hospital to bring Leo his milk.  The night nurse had some speakers set up near his head and was playing music.  This is new thing.  He seems to like it.  He has also been moved to a very quiet area of the NICU and he gets a lot of attention from everyone there.  For us every evening is sacred, every morning seems clear and quiet especially considering how just five days ago, before he was with us, the silence seemed unbearable.  I imagine it will remain like this for a while unless Leo surprises us.  Mornings and evenings, silence and sadness.  We hope that this unfolding of events in the next week and daily flow will begin a rhythm in our lives oriented around Leo.  The simplicity of everyday is the reminder that we'll do whatever we can right now.  And go with the flow.   Justin ...

Reflection: I remember walking out of the hospital with Nika, 4 years ago today. It was an absolutely glorious late summer day. The sun was bluer then blue, and the air tasted like crystal to our hospital air overloaded lungs. Nika was sound asleep in her carseat and on our way to the car, we wandered about on the grass like ship wrecked sailors setting foot on solid earth for the first time. It was incredible. Today we left the hospital for the first time after Leo's birth. The weather was cool with bits of sun breaking through. We walked slowly as if quicksand pulled on our feet. Our baby lay behind, in the arms of the competent NICU nurse. Empty handed, broken heartened, and in pain, I wondered how the world could go on around us, unaffected by our tragedy. On the drive home with the sun breaking out between the clouds and through the glittering trees, I saw it was beautiful. It was beautiful, but magnified into almost painful proportions. Like a kaleidoscope. I think that it wa...

Anna’s:  Please friends, pray for us these next couple days. We are facing some very hard times right now, and need your prayers. Please pray for strength for us and especially for our unborn baby who needs it the most right now. The baby has hydrocephalus. We don't know much more then that right now. Tomorrow is a barrage of tests and probably a c-section. Thank you dear friends for your support. We are facing our worst fears the next couple days. Thank you everyone, it really means a lot to us to read your loving comments. In between tears and fears, we put our trust in God. Whatever happens will happen, and it helps to know that you all stand behind us.   We are back home, and c-section is scheduled for this coming thursday. They want to give our son a little more time to help with lung development etc. What we want is for our Leo not to suffer needlessly. Please pray for us to find the strength to bear the days ahead, and if necessary to find the ability and trust in G...

My wife and I would like this blog to be a place where people can get updates about Leo on their own if they so desire.  Some of our thoughts will flow from here so we want to keep it in one place.  We are assuming if you go here that it will be a prayerful visit not one of fear or anxiety.  That is our hope and also we don't want to spam people with tragic updates on Facebook :), as there is no warning for that yet on Facebook. Leo was born on Monday morning into a  haze of uncertainty about how he would do in the world given his condition.  You can get some insight into his condition but I don't recommend believing everything you may see or read online about    hydranencephaly    (pronounced: -hi-dran-en-seff-a-lee).  Fact is Leo's face is fully formed and except for his enlarged head, which is not itself misshapen, he looks and behaves like a normal infant.  Strange and wonderful at the s...