Sunday, April 24, 2011

Sunday, April 24, 2011

The gang dressed in their new Easter clothes

I wanted to see if Caleb could stand holding onto something. Come to find out, he can, but not quite long enough for a photographically challened Mom to get a good picture!

Looking pretty suave with the pre-church drool

Caleb still hates baths!

Caleb has finished an entire bottle in one feeding! I have been waiting about 5 1/2 months to put that on the blog. Not only has he done it once, he did it four times today.

Bottle Boot Camp has been a huge success! As I mentioned last week, Caleb was increasing the volume that he was taking by mouth daily. By Thursday, we stopped putting the NG tube back in at night. He has not had the tube since then! Today, he took over 75% of the volume he is supposed to be taking. It seems so amazing to just need a bottle and milk, not the bottle supplies, the syringes, the feeding set, extra tape, etc. We would never have guessed that it would go this well.

Caleb has not lost any measurable weight. His weight fluctuates by four or five ounces, but a moderately wet diaper weighs four ounces, so that seems pretty reasonable.

We have also found out that Caleb would rather eat a lot during the day and sleep at night. None of our other kids figured that out this soon! Last night, he went to bed at 11:00 pm and woke up at 7:30 am.

As you may guess, we couldn't be happier! Caleb now looks and eats like a regular baby and his cheeks are healing pretty quickly. Now we just need to convince him that Mom and Dad aren't the only people that can hold him!

One other note, Caleb is now eight months old. Because of all the weird milestones and little segments of his life - 72 days in the hospital, 2 1/2 months waiting for the second surgery, 10 days in the hospital, and settling into normal life - it doesn't seem nearly that long. I now need to make an effort to remember those rough early weeks to remember how far we've come. We are so lucky!

Monday, April 18, 2011

Sunday, April 17, 2011

Teething on the Table

First trip to the Ice Cream Caboose

We are on our way with NG tube weaning. The therapist came on Tuesday and agreed that it doesn't look like Caleb was quitting with the bottle because he was tired. On Wednesday afternoon, I called the pediatrician and got his go ahead to try our weaning plan. He gave us the ok to let Caleb lose up to 1.25 pounds in our endeavor.

Based on talking to other parents when we were in Ann Arbor, doing research on the internet and listening to our parent instincts, we decided to take the NG tube out each day and give Caleb only bottles. This allows him to get hungry and tell us when he wants to eat. With the tube out, he can feel what it is like to eat normally. We bought a baby scale so we can track his weight each day and identify problems early on.

We pulled the tube on Thursday and things went well. He drank about a third of his normal volume of milk, but was not fussy. We left the tube out Thursday night, but we noticed fewer wet diapers on Friday, so for now, we are putting the tube back at night. This allows us to give him three full feedings each day, so the change is not too abrupt. As of Sunday, he has not lost any weight.

We have noticed an increase in the volume that he is taking from the bottle. Right now, he is taking around half of what he should be. He is also doing much better taking his medications orally. If he can hold the syringe, he will drink the medicine.

Feeding was our main focus last week, but Caleb did hit another milestone. On Tuesday, he got to go to the Ice Cream Caboose for the first time. We did find out that if the whole bottle thing doesn't work out, we could add some sugar, freeze the milk and be in business. He loved the ice cream and I had a hard time getting my cone back.

Phil and I are feeling much more positive this week. We were getting nervous with the feeding issues and were worried that we might not get Caleb to eat from a bottle (or from a cup in the future for that matter). Hopefully, we can make some progress this week and be on our way to eliminating the tube entirely. Caleb's cheeks are suffering from the tape, but hopefully that will be short-lived.

Monday, April 11, 2011

Sunday, April 10, 2011

This week has been pretty uneventful. Caleb did not have any appointments and did not meet with his therapist because of Spring Break. He did spend his first night in a hotel on Thursday. We celebrated Spring Break by going to a hotel about 20 minutes away so the Big Three could go swimming. We realized that even though the rest of us had spent a lot of time in hotels since he has been born, he has never stayed in a hotel.

We are working on a plan to try to speed up our progress with the bottle. We are struggling with the NG tube during the day. Caleb is either gagging on it or pulling it out. The red mark on his cheek in the picture is where the tape pulled some of his skin off. Now that he is going more places, we are catching the tube on everything, so if he is not pulling it out, we are.

Caleb has still been taking 20 to 40 mL at a feeding and has not really made much forward progress recently. We think that he is strong enough to finish a bottle, but he seems to lose interest when he has had enough milk to curb his hunger. Unfortunately, this happens about a third of the way through the bottle. Our plan is to talk to the therapist and his doctors and see what options we have for pushing him a little harder.

Caleb is sitting up pretty well on his own, but shows no interest in crawling yet. He has found a way to tuck and roll when he does tip over, so he hasn't bonked his head on the floor nearly as much!

The last two babies that we know that will have the same surgeries as Caleb both had their second stage surgeries last week. Maggie and Ted both had successful surgeries and are recovering in the hospital.

Monday, April 4, 2011

Sunday, April 3, 2011

Caleb was feeling much better last week. His nose was still running, but he was much happier and slept much better.

He is really getting the hang of sitting up on his own. He still tips over when he gets distracted, but he can do it for a couple of minutes now.

He is rolling over more and more, but still only from his tummy to his back. He doesn't see any need to be on his stomach, so why would he roll onto it? He can support his chest now with his arms extended and can squirm to get a toy just out of his reach, but he isn't showing signs of crawling any time soon.

Caleb's bottle skills last week were consistently mediocre. He usually takes between 20 mL and 40 mL now, but never took more than that at a feeding. We are still hoping that he will be able to get rid of the feeding tube. We are trying to push him a little harder, pushing the bottle a little more and holding off on the feeding tube. He still doesn't get very hungry, so if we just waited until he was really hungry and ready to eat, we would be behind a couple of feedings a day. He still needs all the calories he can get, so we are trying to find the right balance of letting him eat when hungry and getting him all of the milk he needs.

We are finally starting to get Caleb into a normal routine. We have adjusted his feeding schedule so I can get to work earlier. We are also starting to get his naps on a better schedule. One of these days, we will get the hang of this!