More calories than Coke?

In the past month or so Ellie has not gained weight as fast as we would like her to, so about two weeks ago we contacted the team and asked for one night of TPN back. That takes us back to 2 nights of D10 and 5 nights of TPN. We are very excited about reducing the number of nights of TPN but only if she continues to grow. Yes, we still weigh her everyday and so we knew that she was not gaining much. This wouldn't have been much of a problem if she had continued to grow lengthwise. But, we also measure her every week or so and so we knew that she had stopped growing.

Ellie at her first pumpkin patch

So, last week we had our normal Short Bowel Clinic day at Children's. They were impressed with her growth, saying most normal 17 month olds gain around 9 grams a day. With the bump in weight after adding the night of TPN back on her average is around 10 grams a day. They were very excited and wanted to take the night of TPN back off.

We had a long talk about what Ellie actually needs from her TPN. She isn't having an issue with hydration so she isn't completely dependent on it for fluid. But, she does stop growing when we reduce nights. This means that she is dependent on it for the calories. So, we had to look at a way to increase her calorie intake so that she doesn't depend on the TPN. So we asked to meet with the nutritionist.

Ellie driving her first tractor(she is blowing me a kiss)

First we increased the calories in her Elecare formula. Now that Ellie is a big girl, she has been bumped up to toddler Elecare, 30 calories per ounce. Still unflovered and foul smelling but a whole lot of calories for our girl to absorb as it passes through.

To give that some perspective, full strength Coca Cola has just shy of 13 calories per ounce. so Ellie is on formula that has just a bit more than twice the calories of a can of Coke. The reason is there will be a fair amount to formula that she eats that she doesn't absorb due to the missing intestine. So no worries we don't have a sugar high spaz for a baby, she seems to be handling the increase just fine.

Ellie and with what she kept calling a fish

We also looked at her solid foods. When we told the nutritionist what we fed Ellie, she said it was way too healthy. She said that we need to increase her calories that come from fat. So instead of Cheerios and pretzels we should be feeding her snack foods like veggie sticks and Ritz crackers. Basically try to keep it healthy but increase the fat. Every short gut kid reacts differently to sugar and to fat, so we just have to try new things and see what happens.

We also looked at her meds. She was on Reglan to help her stomach empty faster, Iron to help with the size of her red blood cells, and Zantac in her TPN to reduce the acid level in her gastric juices. She has had great motility for the past few months so we discontinued the Reglan. This is great because we have heard there are some nasty side effects from Reglan, we haven't seen them yet and we would like to keep it that way.

Ellie with new clothes from Gramma

In the end we decided not to reduce the number of nights of TPN just yet. We wanted to change the calories that she eats and see what happened and if all went well we would take the night of TPN back off. We didn't want to try to change too many things all at once.

It has been five days since we changed everything and she has already gained about a pound. This may be to a bit too much of a jump. We will just have to watch and see if it was a fluke or a trend. It also been five days since we fully discontinued the Reglan and increased her calories and she is doing great. Her output from her ostomy has decreased meaning that we can increase her feeds, either on her milk pump or solids.

She seems to kinda like the Veggie sticks. She hasn't really given the Ritz a chance. We also started adding a bit of olive oil to her baby food and she doesn't mind that and her poops look great! We just have to keep trying new stuff and watch her output to see if she tolerates it. She still isn't allowed to have real milk or any kind of nut, because short gut kids can develop allergies very easily.

Corals at Mystic

The last thing we had done at clinic was a TPA treatment for Ellie's central line. We have had problem drawing blood from it for a while now and just recently it was flushing more slowly. So we did a TPA treatment and it worked like a charm. We have decided that even though the line draws nicely now we will continue to go to the blood lab to do peripheral draws for blood work. The nurse brought up the idea that because only Gib and I are the only ones to ever touch her line, could be one of the big reasons that she not had a line infection in over a year. (please knock on wood now)

So, that is the update. She is doing great and charming us more and more everyday. Oh yeah and we went to Bel Air, MD to visit the Bretkos, Harpers, and the Craigs. It was a blast, and it just left us very excited about the next time. We also went back down to Mystic to visit the aquarium and Ellie had her first play group with the new early intervention. Wow, what a week. Have fun in Detroit Kelly!

Ellie and Kelly