Thanks for the update, Trish...rays of hope, healing and growth raining down on the baby...

Keeping Baby and you all in my and in my prayers.

The baby had to be put back on oxygen today. He just needs a little extra help with his oxygen. They have been working with him on oral feeding (I'm not sure if it's by breast or bottle) but he doesn't seem to like it much. He'll eventually get it. Once he does they take out the feeding tube out. Still no word from the consults and the genetic testing.

To see pictures of him breaks my heart. You can see that he is not well and yet, I can see improvements.

Ah, the sweet little soul...we all pray for the best for your little angel...

My nephew was on all sorts of tubes when he was born and he is 18 years old, about 6'5 and 250 pounds. They seems to have a way of coming around

hi trish,

1 thing i learned when i was a NICU nurse and trying to get preemies to suck was to put a bit of breast milk on a 4x4 and place it near the baby's nose so he could smell it. and/or put a drop on his tongue so he can taste it.

of course you'd have to check with his nurses.

still sending prayers.

Update: My grand nephew is doing really well. They have now moved him to a regular crib. His genetic testing came back negative for any congenital abnormalities. The neurologist isn't too concerned about the little spot on his brain. They will do a repeat MRI when he is 4 months. They tested his muscle tissue and that came back normal. They are still working his limbs to help with the stiffness he is experiencing. He pulled out his feeding tube so they have now placed in through his nose. They are hoping that this will improve his sucking and breastfeeding. He is now almost 4 pounds and is putting on more weight. Once he gets the hang of oral feedings, I'm sure his weight will increase even more. With the fundraising, my niece, her husband, and their other little boy as well as my sister have moved in to a house. The cost is less expensive than a hotel and there are 5 rooms. Since they have other family coming and going to help out and visit, this is awesome for them. My sister has mainly been taking care of my 4-year old grand nephew and being in a house will be much easier than a hotel since he will have more room to run around and play. I'm sure the people in the hotel appreciate it. j/k.

Thank you for your prayers. The prayers are working.

that is great news trish.
i'm glad the family can be together while they wait for him to eat and grow.
what's his name BTW?

if you think mom may be interested in learning infant massage i know of a really good book. years ago i became an infant massage instructor and also used massage on some babies in the hospital (with dr's permission).

all good ways to help baby with stress and help mom with bonding. i'm not pushing it but just that i did it for many yrs and results were worth it.

trish, thanks for that wonderful update. Are they using Mom's breastmilk for his feedings?

Thanks for the update...prayers are continuing to be sent to the little guy and family...