Sunday, March 22, 2009

Daddy's BOY

That's right mommy and the nurse bullied Daddy into holding me. I loved it, I got to see him close up then off to sleep I went. Daddy's arms started to fall asleep and his stomach was hungry so back into the crib I went. After my quick bath and trip to the "big" baby scale (my bed does not have a scale in it any longer) Daddy read me a Veggie Tale book. The pictures that have Abraham on his side and wide awake are when Glenn was reading to him. There is also a little video. It was so cute because Abraham was looking straight at him with his eyes wide open. He was even trying to move his head closer and sucking on his breathing tube. He moves around a lot sometimes and if you look at the clock, it's about 1/2 before he gets his tube feeding. Glenn commented, "This boy is hungry, a daddy knows". He settles in after he eats. He is getting almost 1 ounce of breast milk with fortifier every 3 hours in his NG tube. Today his nurse gave him his first pacifier because he was looking around and sucking on his breathing tube. “He wanted to eat”. He also got a new room today with a window view so he was checking everything out. He definitely can hear because when an alarm goes off he has facial expressions, especially when it’s not one of his alarms. He has a roommate, another boy. His roommate’s twin brother is in heaven. It must be hard for the mother but she seems to be hanging in there. Her family lives 3 hours away and she has a school aged son too. Medical updates: steroids to mature lungs for ventilator wean, there is an air leak around the breathing tube and Abraham moves his head back and forth (sign that he is outgrowing the ventilator), hypothyroidism is still an issue, another brain ultrasound Monday, his heart rate decreases (this is new for him), nurses say this a is normal preemie thing however he just started having this issue, potential causes: cold body temperature. I wound have to research other causes, I think infection can cause this too. He still has low oxygen levels at times however he has them less than before. He weighs 4.4 pounds and is 17 inches long (too tall for some preemie clothes). He also has adrenal insufficiency because at least once a day his blood pressure is low. This could be related to the hypothyroidism since the adrenal gland and thyroid are related to the endocrine system. His kidney and gallbladder are also enlarged, not sure of the exact cause. Please pray that he tolerates the ventilator wean, he has one more day of steroids and the ultrasound shows improvement in the brain tissue, especially the ventricles since they have been enlarged. Today was my last dose of the prednisone and Claritin; The contact dermatitis cleared up. The NICU still had me give him the breast milk even though I was on medications. We don’t know how much prednisone is excreted in breast milk however it might help his lungs since it’s a steroid too. Also caffeine is sometimes given to preemies to help with respiratory status. Some of this is also excreted in breast milk. I guess it’s more cost effective for me to enjoy a Coke then to have some fancy IV caffeine given to him. I will probably have to stop drinking caffeine when he breast feeds normally but for now I will enjoy it and it probably helps him. Still trying to maintain a normal schedule however I tend to wake up around 9:30 or 10AM. I probably should get use to the the every 3 hour feeding schedule however it's difficult without having him with me 24/7.


  1. Hello!

    I found your blog and wondered if you had heard of the Oley Foundation yet.

    We offer free information and peer support for families that go home with tube or IV feeding. Check out our website at

    In particular you might be interested in the

    • Tube Feeding Tips page

    • Meet Patients Section (try all three links)

    • Oley's annual conference -- where you can learn a lot about tube and IV feeding and meet other families facing similar challenges. Preliminary details are posted now, but keep checking for updates at
    There are travel scholarships for first time attendees.

    If you have any questions or would like to be introduced to another family, feel free to contact me.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY

  2. Karen,

    It was wonderful to read your blog today and to sense the positive vibes that radiated from your words. Our family will keep yours in prayer...we live just 25 minutes from Children's. I know Glen is back at the ship. IF you need ANYTHING please email. My husband, Larry, is also stationed with the Land and makes the commute on weekends. Peace, Suzanne