Tuesday, September 22, 2009

To tube or not to tube... that is the question

Sunday night Josh and I made the executive decision to remove Caydence's NG tube. She's never really had the chance to get hungry since we're feeding her every 3 hours and since we've been having trouble with it, we wanted to see how she did without it. Maybe if she had the chance to get hungry, she would eat more and figure out that in order to satisfy her hunger she had to suck on the bottle.

Monday morning we went to see the specialist at the Waisman Center. Caydence weighed in at 8 lbs 4oz. She is in the 25th percentile for her weight and the 50th percentile for her height/length (this is according to the Down syndrome growth chart). Mr. Specialist thought that us experimenting without the feeding tube was a good thing. He was actually surprised that Caydence was still using the NG tube. By this point he said, her doctor should have determined whether or not Caydence still needed the NG tube or if she needed a G tube. He said NG tubes are usually only used for shorter periods of time since they are so uncomfortable for the patient.

The specialist suggested we keep the tube out for the day and see how she does. If she wasn't getting close to her target, which is 60 - 65 mLs per feeding, then we should put the tube back in. Caydence usually takes 5 - 10 mls by bottle and then the rest goes down her tube. When we got home from her appointment, she took 55mLs by bottle! It was the most ever!

Unfortunately, it didn't last. Although she ate more than she did with the tube in, it wasn't enough. After that 55 mL feeding, she averaged about 25 mLs. So Monday night, the tube went back in :( . It broke my heart to put it back in. She was so much happier without it.

Because I am having to quit my job, we are currently in the process of switching Caydence's doctors to another network since she will only be under Josh's insurance. We can't get in to see her new pediatrician and cardiologist until mid October, but the cardiologist wants her to come in and be seen by one of his nurses on Thursday to check her out.

We're going to talk to them about the possibility of a G tube. I've heard a lot of parents are really nervous about getting a G tube put in their child, but after it's over they wish they would have done it earlier. The surgery is minor and is very low risk. Right now I think it's our best option since the NG tube just isn't cutting it.

Other than the tube problems, Caydence is doing well. She had a chest x-ray last week and the doctor said it looked good. She started sucking on her pacifier more and is starting to turn towards sounds.

I've been trying to get a good picture of her smiling, but it seems they always turn out blurry...


Anonymous said...

That is great that she took 55 and 25mls during her feedings. Sorry you had to put the tube back in. Maybe the end is drawing near for the pesky NG tube. I am glad her appointment went well and I hope the one on Thursday goes well too. I can't wait to see the whole family on October 10th. Only a few weeks away!

Carrie said...

At least 25-55mLs is better than 5-10, right? Slow progress, but progress! Good luck with the decision--it's a tough one, but doing what is best for your baby is the most important thing.

Jenny said...

Yes, the 25 - 55 mLs is much better! I think she just doesn't like the feeling of the tube moving in her nose when she is sucking on the bottle. That's maybe why she ate better with it out.

I didn't want to put it back in, but the cardiologist said she has to take a bare minimum of 50 mLs every single feeding otherwise she could get dehydrated and her heart medications could have a adverse effect. She was averaging about 20 - 30mL :(