Sunday, February 27, 2011

Sunday, February 27, 2011

Getting Stronger Every Day

This picture pretty much sums up where we are. Caleb is getting stronger each day. He is able to push his shoulders off the floor now. He hasn't rolled over again, but he is definitely making progress.

He is doing better with the bottle now as well. Now, he always lets us put the bottle in his mouth. Tonight, he even stopped crying when I did it. Previously, he only would suck on the bottle when he was in a good mood and happy. He has been averaging 10 cc's to 20 cc's each feeding and even hit 30 cc's this week (of his 90 cc feeding).

Caleb had a fever last week Wednesday, but no other problems that we could see. We debated calling the doctor, but he wasn't working to breathe and seemed like the other kids do when they have a fever. We gave him a dose of Tylenol and his temperature dropped back to normal and he was back to his happy self. We are assuming that it was just a normal baby thing, but you can certainly drive yourself crazy second guessing!

Caleb weighed 12 pounds, 14 ounces when the visting nurse came this week and his oxygen saturation was 84%. We are closing in on 13 pounds! Caleb got his RSV vaccine Thursday, meaning we have been home from Ann Arbor for four weeks now. Time flies!

Thank you for all of your prayers for Baby Aubrey and her family. It is so horrible to see a family lose a child that they have loved so much and fought tooth and nail to save.

On a happier note, I hit a major milestone a couple of weeks ago. While shopping, I found some winter baby clothes on clearance. I bought Caleb a winter coat for next year. I had not allowed myself to think that far ahead since we found out about Caleb's heart defect!

Friday, February 25, 2011

Friday, February 25, 2011

Baby Aubrey passed away yesterday afternoon in her mother's arms. Please continue to pray for her family as they deal with this. If you would like to send Sarah, Aubrey's Mom, a note, please feel free to visit her Care Page.

Aubrey's Care Page

Sunday, February 20, 2011

Sunday, February 20, 2011

Scar is healing nicely

Thinking hard and eating fingers

Working out

Cereal face

Caleb had another great week. We are declaring that he is no longer throwing up. He spits up every once in a while, but we haven't a clothes-soaking incident in at least a week. We are thinking that the increase in his Zantac dose, the elimination of the oxycodone and/or his recovering from the stress of surgery are the reason for the great change.

When the visiting nurse came on Thursday, Caleb weighed 12 pounds, 9 ounces and his oxygen saturation was 81%. Everything looked and sounded good.

Caleb had cereal for the first time on Tuesday. He did a great job and seemed to like it. He moved the cereal around in his mouth like the other kids did and didn't choke on it, so we think his feeding issues are limited to sucking.

We haven't made much progress with the bottle, but he does tolerate the nipple being put in his mouth better. So far, his best performance has been 10 cc's. Everyone is still hopeful that he will get the hang of it.

We have been working on developing Caleb's upper body strength. His chest muscles are still pretty weak. His neck is quite strong, but he does not push his chest off the floor with his arms like he should. His weakness in this area may also be affecting his ability to drink from the bottle.

Everything is going very well and with the exception of the NG tube and his medications, he looks and acts like a very happy six month old.

Wednesday, February 16, 2011

Wednesday, February 16, 2011

Please say an extra prayer for Baby Aubrey and her mom, Sarah. The doctors told Sarah that there is nothing more they can do for Aubrey and they do not think that she will survive.

If you would like to let Sarah know that you are praying for her, please feel free to send her a message on her Care Page.

Aubrey's Care Page

Monday, February 14, 2011

February 13, 2011

Caleb had a great week last week. His throwing up is not as bad. He doesn't seem to be throwing up as much milk and it is happening less often. We can actually feed him awake now. We don't know if it is reflux, weaning off medication, overcoming the stress of surgery, or what, but it is definitely improving.

On Tuesday, the Early On therapist came and worked with Caleb. We worked on trying to find out where the problem is with his feeding from a bottle. He can suck a pacifier, his suck is just weak. He doesn't choke on his saliva when he sucks his pacifier, so he can swallow. He doesn't have an oral aversion, because he is doing normal baby stuff like putting his hands in his mouth and pulling your fingers into his mouth and chewing on them. I think the problem is that he is surprised when the milk comes out of the nipple. He is used to the pacifier where you can suck as hard as you want and nothing comes out.

The good news is that by the end of last week, Caleb was playing with sucking from a bottle again! It is not a pretty sight, but he is doing it. His sucking is very inefficient, it is more like chewing. At least if he will take the bottle, we may be able to teach him to suck properly. We were very excited! Hopefully we can get rid of the NG tube one of these days.

Caleb had his cardiologist appointment on Wednesday. Everything is looking good. I asked all kinds of questions about his discharge echo from the hospital. They think there are a few things that aren't right, but there is nothing they are going to do about them. It looks like he might have a non-moving clot and his pulmonary valve looks a little funny. The clot isn't moving and the valve works, so that is good.

On Thursday, the visiting nurse came to check on Caleb. His weight was down a little to 12 pounds, 3 ounces and his oxygen saturation was 84%.

Friday, I took Caleb to the pediatrician to get some information on his reflux. I asked the cardiologist on Wednesday, but they deal with hearts - just hearts! Caleb's pediatrician increased his Zantac dose and checked him out. At the pediatrician, Caleb weighed 12 pounds, 8 ounces so we aren't worried about the lower weight on Thursday. Caleb is still not on the growth chart, but he is growing. We found out that Caleb has an ear infection. He is now on an antibiotic for that. At least we know he belongs in our family - Sam is the king of ear infections and I was the queen.

Caleb is pretty happy and really seems to be adjusting to our "normal"!

Thursday, February 10, 2011

Thursday, February 10, 2011

Caleb is still doing fine. Today's post is to ask for prayers for another heart baby we met in Ann Arbor. Aubrey was born on July 25th and has Hypoplastic Left Heart Syndrome. She had her first surgery right away like Caleb and recovered quite well. She had her Hemi-Fontan (the surgery Caleb just had) on December 1st and she is still in the hospital and is having a lot of trouble. They are performing tests this week to determine if she is a candidate for a heart transplant. If you would, please keep Aubrey and her mom in your prayers.

If you would like to follow Aubrey's progress or send her mom a message, you can visit her Care Page with the following link - Aubrey's Care Page.


Sunday, February 6, 2011

Sunday, February 6, 2011

Other than Caleb's throwing up, we are getting back to normal. As you may guess, normal around here should technically be "normal", but there is no need to be picky.

Caleb is still throwing up, but I think that it is from reflux. He does just fine if he is asleep on his belly. If he is awake, he starts screaming shortly after his feeding starts. If he is asleep in your lap, he ends up throwing up before you get you him into bed. We have been trying to feed him while he is asleep. Right now, we figure that it is more important to get enough milk to grow than to master the bottle.

I have been trying to work on bottle feeding, but it is tricky when we are feeding him asleep. He did let me put the bottle in his mouth once and he sucked once, but that is the extent of our success. Caleb's occupational therapist is coming this week, so we will see if she has some ideas for us to try.

Other than the spit-ups and the reflux episodes, he is happy and enjoying being home. He has been talking like crazy and officially laughs. One day last week, I went to get him out of his crib after a nap. He was on his back. He rolled over from sleeping on his stomach. I have only seen it that one time.

Caleb's nurse came to check on him on Thursday. He weighed 12 pounds, 6 ounces. I don't know how official this is compared to last week because he had two different nurses with two different scales, but at least his weight is going up. He is still having wet diapers, so we are assuming that he is not throwing up too much. Caleb's oxygen saturation was 84%.

It is great to be home and moving forward. Caleb has a cardiologist appointment this week. I have a bunch of questions for them like "Can we start baby cereal soon?", "Is there anything we can do for the reflux?", "Is everyone happy with Caleb's heart function and structure?" Hopefully, we can get the answers we need.