Thursday, January 1, 2009

Wednesday update

This update is brought to you from Riley's Room.
Hmm. Where do I start at for today. How about with what a confusing day. I won't bore you with all the details of the earlier part of the day, I'll just tell you the end result.
  • Riley is NO LONGER ON TPN!!!! It was stopped around lunchtime today. THAT is fabulous. That stuff is a double edged sword. Every drop of it that entered his body was life sustaining for oooooh say 2.5 of his current 3 months...but every drop was poison to his liver.
  •  speaking of his liver, his bilirubin level increased some, so they switched him back to phenobarbital from the actigall. Phenobarb is more potent in its liver helping properties, but it has a more sedative effect. Apparently actigall isn't doing the trick though.
  • Speech and/or OT will come 5 days a week to work with him on his bottling. YAY
  • He is allowed 10cc by bottle every 4 hours now. He did so/so with those so far today.Not great like yesterday, but certainly not terrible.
  • His continous milk feeds are up. We are only about 3 days from full feeds now.
  • They removed his D-tube. As in pulled it out. They put in a NG tube in it's place...this goes from his nose just down to his stomach. So now his continous feeds are dripping down into his stomach. This is a BIG step. One that I'm very nervously happy about. I'm happy cause IF he tolerates this (and that's a BIG IF right now), then the doctor says he will begin to bolus his feeds (giving it more at one time, like a baby would normally eat it all at one time) and then he just has to take it by bottle and then home it is. But he very well may NOT tolerate it. So as happy as I am on the inside about the progress, I am not jumping up and down about it because it' s not progress unless it works.  So far, as I type this, we are about 7 hours into the change. He hasn't thrown up or anything so far. Other that vomiting, the test is if he has "dumping".  Just a reminder...dumping is when the milk he eats pretty much just goes straight in and straight out, without digesting or absorption. THIS is Riley's big moment. This is "I can eat by mouth like a normal baby and get enough nutrition that way to make it on my own without assistance" beginning here.  Biting fingernails and twisting loops of hair as I stair at him, as if staring would make the 24 hour "test" go by any faster.
So that is all for today I do believe. New Years Eve is being spent in Riley's room, literally staring at him sleeping. Once again, willing his body to be strong enough to tolerate what we are asking of it. 2009 has GOT to be a better year for him.
Oh. And New Years Day? Riley's 3 month old Birthday. 3 months of NICU. 4 holidays spent in the NICU. wow.


Brad, Kellie, Lucy and Baby Carter said...

Wow! I didn't realize we all have spent 4 holidays in the NICU. Yuck. I love hearing about the progress he's making--Go Riley!! I just know 2009 is going to be a better year.

Anonymous said...

Happy New Year to Lindsey and Jay. Travis is doing great...just finishing up breakfast, his favorite...cheese toast like Mama fixes! Sweet Baby Riley, hoping you are tolerating your milk...keep fighting, you can do it! Thanks Be To God. Love, Pauline

Anonymous said...

A Happy 2009 to the Souza family! It has been 3 months of so many hurdles and triumphs for Baby Riley, but he has shown everyone that he is a strong willed bundle of joy. It may take time, but I'm sure "in Riley's time" he will master the art of feeding, and absorbing it properly. That little sweetheart has been through soooo much, and still continues to smile and charm everyone who knows him. He will be going home, in the very near future, I just feel it in my soul.
Keep up the fight "sweet cheeks" and make 2009, YOUR year!!!
Love and Blessings to all, Dale

Anonymous said...

Happy New Year to all of you! 2009is going to be better. Riley is already showing us that. I hope all will go well with the milk. Riley, show everybody what a fighter you are! :) Hang in there, I know the waiting is hard. Take care, Love, Debbie and Gary

Fer said...

I wish you a Happy 2009 and hopefully Riley can be discharged soon. Many prayers for you and him.

Ter said...

hi I found your link at SHARE (Michelle's post) and thought I would check out your blog and let you know I am rooting for Riley. I haven't read the entire blog yet, but either way I still hope for the best outcome. I lost my daughter in 2005, at 26 weeks gestation, and most recently, I lost my husband to cancer in November 2008, so I know how hard it is to loose someone and I also know how hard it is to see someone you love being sick. Many hugs to you.


Related Posts with Thumbnails