"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Sunday, May 2, 2010

May 2, 2010

This has been an extremely emotional week for our family and I’ve held off updating the blog because I really didn’t know where to begin. But, we know there are many people waiting to hear how Benjamin’s doing so I’ll attempt to give a synopsis of what transpired over the past couple of days.

Benjamin’s platelets dropped really low last week so he’s needed a few more transfusions. His doctors thought he either got an infection or he was taken off the antibiotics too soon. Because of his low platelet count, a head ultrasound was performed to rule out additional brain bleeds. We had a family meeting on Wednesday and we were told that based on this new head ultrasound, his brain damage has evolved. Basically there are significant holes in the white matter on both sides of his brain around his ventricles. On a scale of 1 to 10 (10 being the worst), his damage is a 9 and it’s likely he’ll have severe cerebral palsy. His neonatologists want us to have another meeting with the neurology and surgery teams to discuss what this means for him and for us. We’re trying to be strong, but it’s hard when I ask “can I hope at all?” and the answer I get is “I have to defer to neurology.” The frustrating part is that we know neurology is going to tell us it’s bad, but we’ll have to wait and see because they can’t predict until he doesn’t reach his milestones.

On a more positive note, he now weighs 3 pounds 5 ounces. Some of that weight is edema, but this is normal in preemies. His belly is still measuring large and there hasn’t been any talk about him starting back up on the feeds, but the resistance the surgical fellow has been feeling when he dilates his stoma is lessening which is good.

The little bugger hates his breathing tube and apparently Friday night he managed to gag it right out of his mouth! Ryan and I were mortified when we heard, but we were told the situation was handled very well and luckily his nurse and respiratory therapist were right there when it happened so it didn’t take too long to get a new tube put into place. We keep telling him that if he would just learn to breathe a little better he wouldn’t even need the tube! He’s very strong and unfortunately because he has a tendency to grab his tube and yank on it, the amount of tape plastered to his face is ridiculous. It runs pretty much from one side of his head to the other.

Please keep praying for our baby and hope this new week brings us smiles instead of tears.


  1. Jackie, he's beautiful and he's a blessing. Like that poem you posted a couple of weeks ago, you're in Amsterdam instead of Paris, but who needs the Eiffel Tower when you have tulips? I love you and I'm always praying for you all.

  2. We are praying tenfold for you all. You and Ryan are amazing and Benjamin is such a strong little man! We are sending all our love your way and hoping this week, with a new month, will bring new good things your way!

  3. We are there with you guys in spirit and continue to pray for Benjamin that he gets stronger and healthier everyday and also to help you all make it throught the day to day.

    Love you all lots!

  4. Praying always for Benjamin, as well as family members. He is yours to love and that love will guide you forward, wrapping its arms around you as he continues to grow.