First, an update:
Caleb is going great. They were able to wean him some on the nasal cannula. Today, they weaned him down to a setting he can go home on.
He is doing great with his feedings through the feeding tube. He is now getting 130 ccs during the day and 160 ccs with 3 teaspoons of cereal at 10:30 p.m. (30 ccs equals 1 ounce). They have been dipping his pacifier in sugar water during his feedings again. They are planning on starting the oral feedings again tomorrow. Like last time, they will start slow. Depending on how he does with the feedings, he may need a G-tube put in in a couple of weeks. I don't know how long he will need the tube for - or if he will even need a G-tube.
They will start to wean him off some of his medicines soon.
Here's what happened at the meeting with the good doctor today:
He told me that Caleb should be home (drum roll please) in about 1 or 2 months. They are starting to get him on settings and medicines we can take care of at home. We will probably have some type of home health care nurse for him.
He is still having his episodes every couple of days. (My mom got to see an episode for the first time Saturday. I don't think she liked it.) The good doctor assured me that Caleb will be ready to go home when they send him home. They will not send Caleb home while he is having the episodes or needing specialized attention. And he won't send Caleb home until Cary and I feel comfortable taking care of Caleb's special needs.
Right now, it looks like Caleb will be coming home on the nasal cannula and maybe a G-tube (unless he just kicks butt with round 2 of oral feedings and can go home on full feeds from a bottle).
Thanks for all of our thoughts and prayers! Please keep them coming. It will still be difficult when he does come home.
New pictures from Saturday!
He's awake!
If you look close you can see his cute chubby smile.
Sometimes it is so hard to have the cutest baby in the world. ;)
6 comments:
Grandma ended up with another gray hair after Caleb's episode on Saturday.
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Madison said "ababy" when she saw the pictures! Maybe she does know she has a cousin and he isn't just someone we talk about like an imaginary friend! The pictures are great!!!!!! He is such a little chunk-a-monk!!!
He is so cute and chubby. I love seeing pictures of him awake. I'll tell Sarah she needs to start working on those pictures for Caleb's room.
Sarah said: "He is the chubby baby from the chubby baby company. My mommy said chubby babies can't smile, but I showed her - 'Cheese'."
"I can't wait to meet him. I hope he comes home soon."
We are so excited to read words like "oral feedings" and "come home in 1 - 2 months". Yours, Cary, and Calebs resounding courage and heart through all of this is an inspiration. As always we keep you in our thoughts daily.
What a chunkster!!! It really must be hard having the cutest kid on the block. Keep em away my from my daughters. I see that mischevious Locke sparkle in his eyes that makes all the girls swoon.
Chad and Meredith
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