Skip to main content

In Peace let us pray to the Lord...

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 same time he has the appearance of a wise sage advanced beyond his years.  We are not sure what he feels or his pain threshold.  Most of the upper parts of his cerebral cortex are missing and replaced with fluid, but there is residual brain matter in the lower parts though how "normal" it is is undetermined.  Unlike normal babies who store sense impressions from the world using higher parts of the brain such as memory we are not sure if he will act from memory at all as he grows.  This informs the bonding process for infants, but they can also bond at different levels without memory, so we think.  Somehow babies just know their parents.  Leo knows us but in a very primitive sensory way (can't explain!).  As far as we know he may not be keeping that sensory data for future record.  Then again all infants are mysterious so what Leo lacks he may overcompensate in other areas.  But it's clear that most of the normal brain tissue that is needed for growth is absent and so his prognosis is grim.

We want to open this blog up to anyone who is interested.  It exists to inform people who are concerned about Leo's condition.  Hopefully it will serve many functions: a myth buster, a contemplative forum, or perhaps a resource for all of you who are eagerly waiting and praying in the wings.  More later.  
Justin

   

Comments

  1. I love that you're both doing this and what you both wrote was absolutely beautiful, sensitive, loving and touching. My thoughts, prayers and love are with all three of you!--Kathy

    ReplyDelete
  2. Thanks, guys—our love to you, Nika, and Leo.

    ReplyDelete
  3. Justin, your writing is beautiful, inspiring, and draws me closer to our Maker with tears in my eyes. I'm so glad you are doing this, because so many are praying and hoping and loving and walking alongside you and would like to know as often as possible what is happening and how you are all doing. Thank you for this gift. I love you my brother!

    ReplyDelete
  4. You are in our prayers.
    -Fr Daniel

    ReplyDelete
  5. Leo is absolutely Beautiful!! He's a DuMoulin baby, afterall.

    ReplyDelete
  6. Oh sweet Leo. He's beautiful! Praying for you often.

    the coxes

    ReplyDelete
  7. Dear Anna and Justin, Nika and Leo,
    Our hearts ache for you; our prayers envelop you. Praise to God for all things! May God continue to shower you with His love and joy -- joy because such a beautiful one as your son exists. Each moment is precious for all of us. Love breaks through to eternity. Thank you, Leo, for teaching us this!
    Nil and Sheila

    ReplyDelete
  8. You all give me pause - to think, and to thank and to wonder...My prayers are with you and yours. And I will keep praying..
    veneda gabourel

    ReplyDelete
  9. Be assured of my prayers from Australia.

    ReplyDelete

Post a Comment

Popular posts from this blog

Lost In Summer

It has been a long time...maybe the longest since I have written to you all last. This blog has meant many different things to me over the past seven years, in fact, it has taken as many different manifestations as its subject matter, Leo the little lion! Not so little anymore, in a couple weeks he will be seven years old.  And so will this blog!  It is amazing to think back to the frightening beginning of it all, and to realize that never in a hundred years could I have pictured myself now, sitting and typing this post at my sunny kitchen table, in my own house, while the early morning sounds trickle in from the open porch door and mingle with the voices of my children in the other room. Not one child, as we all thought seven years ago, but two.  Seven years ago, Leo was not going to live to his first birthday. He was not going to be able to talk sweetly to his big sister, as I hear him doing right now. Though I'm sitting in the other room, I can picture them both clearly; his s…

For The NICU

So you guys know that September is the NICU (Neonatal Intensive Care Unit) awareness month right?  Yeah, I didn't know either.  Every month there is some disease or disorder that we should worry, promote, and be aware about...so after awhile all that awareness stuff gets tiring... But this is the first time I've heard of an awareness month for a place, rather than a physical condition. What's up with that? How come we need an awareness month for a section of the hospital? We have an awareness month for breast cancer, not the cancer ward itself...so why the NICU? I'm pretty sure there is a preemie dedicated month, and one for every other condition that may have put the infant in the NICU in the first place, so why the preferential treatment? After thinking about it for awhile, the only reason I could come up with for the need of this awareness of a place, is that the place itself has inherent issues that people (especially potential NICU parents) should be aware of. No…