Monday, August 13, 2007

A Busy Day

Noah continues to do well today. One odd (and not so good) thing, he had ectopy again this morning. They did DC his potassium supplement last night so that might have been the reason because it cleared up by the afternoon. But still not something I wanted to ever see again.

He had his Newborn Hearing Screening done today and passed with flying colors. He also had his first PT (Physical Therapy) session. He hasn't been able to move and act like a healthy baby does so we are going to work on getting his body back into shape (baby shape that is).

They have also weened several meds and started him on a new one called Verapamil. It's a Calcium Channel Blocker. (I've taken one for Migraines for years) It should help reduce the pressure in his heart and help lower his heart rate a bit. This will help his heart fill more and be able to push out more blood. See, he has what's called a Co-Arc. Its where the new heart's Aorta was stitched to his own Aorta becomes a little narrower and tighter. Because of this, it's harder for the heart to push the blood out and the muscle in his left ventricle is becoming too thick. This new med should help fix this problem, but there is a chance they will need to take him back to the Cath Lab to balloon the Co Arc. But for now, that's NOT the plan. He's just fine. This should just help make him better.

Lilly, on the other hand, was an absolute pill today. Jen said she was fine for her but as soon as I got here it was one tantrum after another. I know she misses her Daddy.

One fun thing here at the RMH... tonight was Bingo night. A group or family comes and sponsors a few games of bingo and you can win toys for the kids. They have blankets, coloring books, stuffed animals, movies, books, toys, and tonight two big special toys for the final games of blackout. And I WON!! I won several small games and got Lilly some coloring books and a cookie monster friend, and a beanie baby. And the final blackout game I was able to get her a Workout Care Bear. It talks and moves and "exercises". She was very excited. But I think she had more fun trying to climb in the box then she did with the Bear at first.


  1. I'm so happy that you were able to go and have fun and de-stress playing BINGO and that you won so many games! That's so fun!!! That cracked me up that Lilly loved the box the care bear came in. . . go figure!! Love, Jen

  2. Does Lily need more "stuff" to do? I really think our kids have more in common than we think... Ty is PERFECT for D and the second I get in he WHINES and throws fits. Are the related.

    Oh and Yes crys... I think from our apartment to this house we have 110% cleaner house. I sit here with Just the undies on our body left for the laundry and a half a load of dishes.. Who knew!!!

    Let me know if we can send Miss Lilly a care package with activities.

  3. I am happy to read that little Noah is doing better. Noah, along with all of your family have been and continue to be in our prayers.
    If I can be of any help please let me know. I am grateful you are there for our little Beckham as well. We appreciate your support for Nathan and Kim.
    The first few months are always the hardest after transplant and the "setbacks" are frustrating and at times difficult to handle - but it does get better.
    I am impressed with your strength and faith Crystal.

    Kally Heslop

  4. hahaha! I remember that, I even got pictures on my phone of Lilly playing in the box. Good times, Good times.


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