My plans for tonight

1. Go home
2. Eat dinner with Cary
3. Go see Caleb
4. Feed Caleb from a bottle
5. Go home
6. Sleep

That's right, Caleb is now trying the bottle. He gets to try a bottle 1 or 2 times a day. His first try Sunday morning, he didn't suck hard enough to get any milk out. Then he gagged. His second try Monday morning, he got milk out, but didn't know what to after that. Then he choked and had a little episode. Tonight, I get to feed him! This will be the first time I get to feed him with a bottle! I'll have the nurse take pictures.

He is now on the nasal cannula all the time.

Here is what he has left to do to come home:
1. eat full feeds (he needs to be at 90 ccs each feeding)
2. suck, shallow, and breathe while feeding from a bottle
3. hearing test
4. car seat test
5. figure out what they will do about his head
6. other stuff I don't know about that I'm sure I will find out about soon!

Oh - Caleb now weighs about 3,000 tons (9 pounds, 15.4 ounces).


Update!

Caleb drank about 5 ccs from his bottle last night! He is getting 80ccs of formula (by a feeding tube) every 4 hours (just 10 away from full feeds). The nurse gave him his bottle last night. I have a feeling the next few feeds the nurses will probably give him. After he catches on to the bottle thing, I will be able to start feeding him.

He is on the road home. It could be weeks or it could be months, but he is on his way.

update for hedda

Here is a quick update so Hedda will leave me alone. ;)


Caleb is starting to take stuff by mouth now. They started to dip his pacifier in sugar water and let him suck on it during his feeds. That way he will connect sucking with food. He eats at 8, 12, and 4. I was able to give him his first round of sugar water last night. He loved it! The goal for the next 2 weeks is to get Caleb on the bottle.

Yesterday he was up to 50 ccs of formula every 4 hours. He is doing great on the soy formula. His IV fluids have been cut way back.

Thursday night at about 7:50, Caleb started to get cranky. The nurse and I couldn't figure out what was wrong. His diaper was clean, he wasn't hurt, he was comfortable. We were lost. She mentioned it was almost time for his 8:00 feeding. Then a light bulb went off in both of our heads. Caleb was hungry!! For the first time ever he was hungry! It was so neat to see. He probably didn’t like it too much.

Physical Therapy stopped by yesterday and started Caleb on some exercises. He loves his exercises! He is so awake and alert during his exercises.

I’ll update later today after I talk to the hospital. (Hedda’s probably going to miss the update. She will be on her way to a cruise and she refuses to take me.)

The infection's gone!

Caleb’s infection is gone and he should be done with his antibiotics tomorrow.

His feedings are going great! He is back up to 35 ccs every 4 hours. He has very little residuals and he is pooping!

He is now a giant 9 pounds, 4 ounces.

He is still on CPAP. I don't know when they will try the nasal cannula again. They can't give him a bottle until he is on the nasal cannula. He has only been fed through a feeding tube. He has never eaten from a bottle.

2/21 Update:
They put Caleb on the nasal cannula this morning at 8am.

Update

(These pictures are so cute, I had to keep them on the front page!)

Caleb is doing much better. He went back on CPAP yesterday. He is doing well on the CPAP, but not good enough to back to nasal cannula - yet.

The infection he has is very strong. They have him on a strong antibiotic. His oxygen rate drops every time he pees, because it hurts him so much. He has a special lotion on his butt to protect his skin from "burning diarrhea" that the antibiotic is causing. He is in an isolation room for precaution (We do not have to put on gloves or a gown to see him. It is just a private room).

They do not think he has a stomach ulcer. After more tests, they think he might just be lactose intolerant. They have sent some blood work to Emory for testing to see if he is lactose intolerant. They are starting his feeds again today. He will get 5 ccs of soy formula every 4 hours.




I think I have figured out a way to send everyone an email when I update. Leave your email in the comments and I will add you to the reminder list.

Caleb had a rough weekend.

Caleb has another UTI. The charge nurse called us at 5:30 Sunday morning to tell us that Caleb had to be put back on the respirator. They put him on medicine to sedate him, started him on 2 antibiotics, and gave him a blood transfusion. They told us he wouldn't be on the respirator long. If Caleb pulls the tube out, they will not re-intubate him and they will put him back on the nasal cannula.

Caleb also has a stomach ulcer. They told us this is common with older preemies. They put him on Maalox and stopped his feedings (he had made it up to 55 ccs every 4 hours - almost 2 ounces!).

When I talked to the nurse this morning, she said his levels are starting to go back to where they should be. The doctor is going to call me later today after he finished rounds. I will be talking to him about getting Caleb off the respirator and off the sedation.

New pictures of Caleb from Saturday!

CF test results are...

negative!!! Caleb doesn't have CF!

I guess I just needed to call the lab retarded to get the test results back.

Caleb took a few steps towards going home yesterday.
He put him a regular nasal cannula at around noon yesterday. The orders where to switch between the nasal cannula and the CPAP every 12 hours, unless he was doing good with the nasal cannula. When I left at 8:30 last night, he was doing great with the cannula. Some time during the night he went back on CPAP. This morning he went back on the cannula. He looks so great with the cannula.

His NJ tube is now a NG tube. He is now eating 45 ccs (1 1/2 ounces) over 1 hour every 4 hours. If he continues to do good with his feedings and with the nasal cannula, they will start to feed him with a bottle once a day.

He is doing much better with his episodes. He has about one a day now.

His IVH is still an issue. They are still needing to tap his VAD. He will probably need a permanent shunt.

Quick update

Caleb got a NJ tube Friday. This has helped with his acid refux.

He went back to Gwinnett late Monday night. He is still getting use to Gwinnett. He is having some “episodes.” He will stop breathing and his heart rate drops very low. I think (and hope) the episodes will stop after he adjusts to being back at Gwinnett.

His feedings are up to 11 ccs every hour.

The stupid lab is now saying it will be 4 to 6 weeks before his Cystic Fibrosis test results are back. Egleston sent the blood work to Emory and Emory sends all of their blood work to another company. That company is retarded.


Caleb wears braces on his arms everyday - 4 hours on & 4 hours off. Within about 5 minutes of putting the braces on, he is already taking them off.

nothing much

Not much has changed with Caleb.

I will post a full update later today.

Caleb's being transferred back to Gwinnett today - right now!

Caleb update

Caleb is continuing to improve.

He had a few episodes of apnea (not breathing) the past few days. His lungs looked little a nasty on the last X-ray. He will be getting lasiks every 12 hours for 3 days to clear up his lungs. They also put him back on the CPAP for about 3 days.

He is now getting 20ccs of formula every 4 hours (full feeds are about 75ccs). He is still getting all of his formula through a feeding tube. Since he is eating enough to get nutritional value from his feedings, they have started cutting back his IV fluids. They started him on reglan today to help his gut process the food.

He is doing better with his poop! He made 2 nice dirty diapers for his nurses yesterday. He will still get enemas every 12 hours until the Cystic Fibrosis test results are back - should be any day now.

If he continues to tolerate his feeds, he will be back transferred to Gwinnett soon.