Remember that question I asked you not to ask me?

Well, I had a meeting with the good doctor today and I now have an answer. (Just to drive you crazy - because I think it's fun to do - I'll tell you the answer at the end of the post.)

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. ;)

update

Caleb came off the respirator Saturday evening. He is now on the high-flow nasal cannula.

He has had a couple of really good days.

His physical therapist is making him new hand splints. He has outgrown his old ones. (He has splints because he keeps his hands in fists so much. They want the ligaments in his hands to stretch, so he wears the hands splints a few hours everyday.)

He is scheduled to have a neurological consult sometime soon. They have not needed to tap his head (to remove the extra fluid caused by his brain bleeds and hydrocephalus) since February 9. The consult is to decide if it is time to remove the device they have in his head to drain the fluid.

He should start back on oral feeds soon.


Many people have asked how they can help. One way to help it is NOT ask when Caleb is coming home. The first time some one asks me that everyday it's ok. But, by the 5th time I'm asked that everyday it's not good. It just rubs in the fact that he is not home and if makes me feel like I'm a very bad mom because my baby is not home. I know people "mean well." But please DO NOT ASK! You will know when he comes home. I have no idea when he will be home and asking me the same question over and over again just upsets me - even if you do mean well.

Pictures!

Caleb a couple of weeks ago


Caleb in his swing. (see he really does have eyes.)

The line's out!

but, it's time for me to go to lunch. I'll tell you more later.

hee hee - that was fun.

ok now here's a real, full update:

When I got to the hospital last night for my daily Caleb time, the good doctor had just finished pulling out Caleb’s central line. Caleb was awake looking around like nothing had happened.

He is so pink now. I love having him off the IV fluids!

His antibiotics will be stopped soon. Then, he won't need his IV (which is on top of his head now)!

The good doctor said he would like to get Caleb off the respirator today. But, the good doctor's shift ended yesterday. :(
I will talk to the respiratory therapists when I get there today. If Caleb is still doing well, I don't know why they would wait to take him off the respirator.
The good doctor said they will let Caleb tell them if he needs to go on the CPAP or if he can skip to a cannula. As soon as he is back on the cannula, they will go back to giving him some oral feeds.

Happy St Patrick's Day!

central line's still not out!

Caleb still has his central line. He hasn't used it since Saturday. He doesn't need the line since he is off the IV fluids. The dr told us to it is very painful to take the line out. Caleb is still on the respirator until the line gets pulled because they will need to heavily sedate him.

He was doing good enough to get weighed and bathed Tuesday night. He now weighs 11 pounds, 8.6 ounces.

They have adjusted his feeding schedule so he can sleep through the night. He gets fed at 5 am, 10 am, 2 pm, 6 pm, and 10:30 pm. He is now getting 140 ccs (a little over 4 1/2 ounces) during the day and a little more at 10:30 and 5.

doing better

We had a meeting with Caleb's doctor last night and we feel much better. He told us that bacteria from infections do not show up in blood work right away. If they had done a blood culture on Caleb Sunday or Monday, the infection probably would not have shown up. He cannot tell us why blood work was not done Tuesday. He wasn't working then and he doesn't know why the other doctor made that decision.

I told him I just wanted Caleb to get to the point where is his continuing to improve without anymore set backs. The doctor said he is there! His jaundice (caused by the IV fluids) is less then 1/2 of what it was. His levels are all looking great.

The doctor told us Caleb has been a challenge. There are certain things they expect a 26/27 week preemie to go through. Caleb has been through all of it and then some.

The good news:
Caleb is on full feeds now. He is eating 110 ccs every 4 hours. His IV fluids are off. The doctor wants to pull Caleb's central line and get him off the respirator by Sunday or Monday.

They have not tapped Caleb’s head (to drain off the extra fluid) since Feb. 9. The doctor said that is very good. Caleb’s body is starting to absorb the extra fluid. If it continues to absorb the fluid, Caleb may not need a permanent shunt.

The wdoctor was pleased with the progress Caleb had made with his oral feedings before he got sick. Those will start back soon. After the infection is gone, we will be back on the home stretch.

Caleb is taking some of his own breaths now and he is starting to act like himself again.


I will add new pictures soon! Caleb is huge now! The last time they weighed him, he was 10 pounds, 4 ounces. He is full of chubby rolls. I can't help but to kiss his big cheeks and his big belly.

Please keep Caleb in your prayers and thoughts. We still have a long road.

another infection...

Caleb has another infection. He has been having a hard time since Sunday. Wednesday morning, the nurse practitioner finally placed an order to do a blood culture. And, surprise, they found out Caleb has an infection. I don't know what took them so long to decide to do a blood culture. If they had done the culture sooner (like Tuesday morning when I asked about it), Caleb would not have gotten this sick.

Wednesday night at about 11 p.m., the hospital called me to tell me Caleb was having a very bad night and they were going to have to put him back on the respirator. He is too tired from fighting the infection to be able to breath on his own. I found out Thursday that Wednesday night he was having a very, very bad night. He was pretty close to not making it (again, if they had done a blood culture Tuesday when I asked about it, Caleb probably would have never gotten this sick). They had to do chest compressions (kind of like CPR) and give him some pretty strong medicine to get his heart rate up. His heart rate is good now and they have not needed to do anymore chest compressions.

They started him on 3 antibotics Wednesday after they found out about the infection. Last I heard, they are still trying to pinpoint excactly where the infection is coming from. They should know today or tomorrow.

Last night, Caleb was not taking any of his own breaths. The respirator was doing all of the work for him. He looked at me with confusion in his eyes. He just wants to know what happened - why is there a tube in his throat? why doesn't he make any noise when he cries? why does he feel so bad? where is his pacifier?

They are still giving him his feedings through the feeding tube. He is getting 100 ccs every 4 hours (30 ccs equals one ounce). His IV fluids have been cut back more.

He has a doctor at Gwinnett that we really like. He is back today.

Caleb is 5 months old today.

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When we got to the hospital to visit Caleb Sunday, we were surprised to see him on the CPAP. He had a rough night Saturday, so they put him on CPAP Sunday morning. Monday morning, they made him his own special high-flow nasal cannula. He has been on the high-flow cannula since then.

They stopped his bottle feeds Sunday when he went on the CPAP and they do not have orders to re-start them yet. When I was there Saturday, I got to watch him eat 7 1/2 ccs from a little mini-bottle they make him. He ate it, swallowed it, and kept it done - all 7 1/2 ccs!

He is now getting 95 ccs (a little over 3 ounces) every 4 hours by a feeding tube. They have cut his IV fluids back more. His color is looking so much better!

Caleb woke up last night while I was there and just stared at me. He would look at his mobile, then me. When he woke up, he reached out to hold my hand - then he reached out his other arm to hold the nurses hand. My heart melted. He is the greatest baby in the whole world!

The meaning of Caleb's name

I found this meaning of Caleb the other day. It fits him perfectly (except the dog part).

Caleb is doing well. He is now getting 90 ccs every feeding (through his feeding tube). He is having problems with the bottle. This is normal for preemies. They are back to giving him a pacifier dipped in sugar water with every feeding. They are going to try put formula in something like this and see how he does.

He had a very good day yesterday. He spent 3 1/2 hours in his carseat (they try to put him in his seat everyday so he isn't just laying on his back all day) and he spent 3 1/2 hours in his swing. The nurse told me he was awake and looking around while he was in his swing.

I keep forgoting to take the digital camera to the hospital, so I don't have any new pictures today.

Caleb is now 19 1/2 inches long and weighs 10 pounds, 4 ounces. He is a little over 7 weeks old adjusted.