Leo Clement

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...