Skip to main content

thoughts tell a story...


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 God to do what is right.  Is trying to make every day this week a gift to our son. A gift of glimpses of the best things in life. A summer's day, a poem, a tasty meal, the sound of his family's laughter and the knowledge that we love him forever, no matter what happens.  Water broke, at the hospital now. Please pray for us.  Leo born this morning around 1:00. Our little angel baby breathed on his own, and instills everyone around him with love and peace. Our hearts are calm and our wishes are respected. We are grateful for being given the chance to witness him to Christ. Thank you everyone so much, and we will let you know as things progress.  Leo is hanging on and turning the doctor's many "can't"s into "cans." He proved them that he can breathe, stay oxygenated, and drink. Today there was talk of doing shunts. Not that they will cure him, but will drastically reduce the pressure on his head, and perhaps bring it down in size. We are calling him Leo the lion…


Justin’s:

I feel it coming back again like a rolling thunder chasing the wind forces pulling from the center of the earth again I can feel it. Please pray for us. Life is precious.  Message to Fathers: Love your sons. Don't hold back. Tell them about the world. Tell them about God. Tell them you love them. Do what you can. I am telling myself I will do the same no matter what happens next week and my wife is credited with inspiring me in all my being to love my Son this way. She is my heart.  Many of you don't know all the details, but since I have some time and some peace and calm, this is the latest. My son was born into the world on Monday morning, early. His name is Leo. My wife and I liked that name because of my favorite soccer player, Tolstoy, and St. Leo of Catania (whom I had to write a paper about recently :).  He developed in the womb what they call massive hydrocephalus which has compromised his brain development and continues to do the same after birth. He is not expected to live long.  Nevertheless, he is conscience (we don't know to what degree) and behaving like a normal infant. I am grateful I got a chance to know him and love him. Nothing more desired at this point and no promises just him and his beautiful life. I am at peace. Thank God. Love to all.

Comments

  1. Thank you, Justin. More and more love for all.

    ReplyDelete
  2. Thanks for this, all. We love you and continue to lift you up in prayer.

    ~Nicki and Dusty

    ReplyDelete
  3. What a beautiful, precious baby boy. He is truly blessed to have been born to such parents. We love you all very much!

    ReplyDelete
  4. More love from Lee and Bo. We are with you every day with our prayers.

    ReplyDelete

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...

The Heart Knows

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...

Shunts Away!

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...