Tuesday, December 23, 2008

Luke Update

Well...I'm finally posting something. Tonight I came home and Ben is staying at the hospital. Last night Lukey just would not sleep. We are still in the hospital because Luke can't stop throwing up. We are preparing to be there for Christmas, though we are still holding onto hope that we will get to come home tomorrow. Luke had pulled out his NG tube (feeding tube) so they decided to keep it out and try feeding him. He did really well for a day, then stopped eating altogether. They put the tube back in and he is being fed and getting all his meds through the tube. It's actually so much easier to give him his meds that way, but I would love for him to start taking a bottle. He will go home with the ng tube, so they had to come and teach me how to use the pump and fill it with his formula and what not. On top of that he is now going home on 11 different medicines, all with their own instructions. I am now officially a home health nurse.
Lukey after he pulled out his ng tube. He looks like his old self.

Levi, keeping himself busy at the hospital.
Luke has had so many problems with formula, he is now on a special pre digested, hypoallergenic formula. If anyone would like to donate some breast milk, I'd happily accept. Seriously...I thought about going on Craig's List looking for breast milk. During his stay in the ICU...I just could not produce anymore milk. Maybe due to the pregnancy too. Levi has been coming to the hospital and getting spoiled by the Child Life Specialists. They have a big play room, with all the cool Wii games and activities and crafts. Today he was eating pizza in there and playing Wii, while I was gagging on meatloaf and cleaning up vomit. The hospital really does do a lot for the kids that are in during the holidays. We have had two visits from Santa and one from a family that always donates toys to the kids. On the outside of Lukeys door is a basket where Santa's helpers put a little treat in everyday. We desperately want to be home for Christmas, but will be happy where ever we are. Lukey's bottom teeth are also coming in, which adds to his irritability. His incision is healing nicely and his eyelashes and eye brows have come back. His hair is growing in fast too. He looks way more like Ben now than before. Well I had just 3 hours of sleep last night, so I will post some pics and say goodnight. Thank you everyone for all the cards and cookies and meals and prayers..oh and livers (Uncle Michael). We are so grateful I just can't even express it with words. This has been the most difficult time of our lives. I feel like I have been walking through the valley of the shadow of death...but my comfort is that I know I don't walk it alone. The Lord is with us..and he has put so many people in our lives to walk with us through the valley...all the way to the mountain top. We'll get there!! Nana and Uncle Michael's last visit before flying home
Levi loves his baby brother.
A happy Lukey. I love how they let him wear his own clothes instead of a hospital gown.
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