Our version of Penicillin?

Friday morning we had what now seems like a fortunate error (at the time, it was an 'oh, shit!' moment)

Ellie has been on an enteral (formula) pump for about 20 hours a day for the last six months, working her way up to getting about 40 cc's (about 1 1/3 ounces) of formula every hour. This is a big step for the girl that used to tolerate only 1-2 cc's an hour. Each night we have taken her off the pump from 4 to 8 to give her a break from the backpack, give us some time with a 'free' girl, and also try and build her appetite for dinner each night. It worked well and the trickle of food was good for her bowel.

At our clinic appointment on Thursday the doctors suggested a slow transition to more time off the pump and more solid foods to complement her formula total but suggested that we stop increasing her pumped formula because tube feeds isn't the end goal for her.


In the confusion of a clinic visit on Thursday we forgot to plug Ellie's pump in and at breakfast on Friday the battery died. This forced us to give her Elecare by mouth for a few hours that morning while the pump charged. At noon when it was time hook her back up to the pump, we noticed a very interesting thing: her ostomy was behaving very well for us and she had a great appetite for lunch, which is usually a hit or miss meal. Since we were on pace to get a respectable daily total of formula into her for the day, we made the decision to stick with this approach for the day and see where it went. In the past big amounts of formula have flushed through her so fast that they weren't worth anything, but this time around, for some reason they seemed to be working.

The end results were great. She took all of her formula for the day, had a good ostomy numbers for the day and ate four good meals (we have added a 4th meal between lunch and dinner).we hooked up her enteral pump at 8 with her TPN for the overnight infusion and we had a breakthrough on our hands- a orally feeding girl who only had the pump at night!

I guess good things happen by accident sometimes.

Since Friday went so well we gave it a shot on Saturday as we went to zoo in Boston. We simply gave her cups of formula every few hours instead of letting the pump work.

Ellie loves sippy cups and likes them even more with straws. She gulped her stinky Elecare and we were in business.



This change was more dramatic for Abby and I than Ellie. It is a strange thing that is hard to describe but something that we both noticed during our trip- we suddenly had a kid who looked 'typical'-without tubes. We have gone from having a kid that used to get comments like, 'Oh my. That child is so sick that she needs tubes!' (no kidding) and now we don't have anything more than a lump for her ostomy.


It was/is sort of like losing your Sick Kid Club membership. With Ellie wearing abackpack with the scary white tube it automatically made Ellie one of the 'sickest' kids in the place which made is sorts of kindred spirits with any parent that had kids that were 'atypical'. All of a sudden we had a bubbly little girl running through the zoo. For the first time in a long time, at first glance, she had absolutely nothing in common with other kids with medical issues.

At one point, we emptied an ostomy out in the open (as we did in the Boston Public Garden this summer) because there wasn't a bathroom nearby as we normally do. Abby and I agreed that a little part of us wanted to get our membership back.

We kept going with this approach through the day today to see if we were seeing a new trend or a fluke but things are still moving in the right direction. Some things have popped up that we have noticed but overall it is a great change.

For example, Ellie gets truly hungry for the first time in her life now and we can see her energy level decrease when she needs formula and increase with a fresh dose of Elecare. we have also noticed an increase in her appetite through the day which is great since solid food seems to do great things for her bowel and poops.

And a two hump camel makes a two-hump poop....

Her dinner was so good tonight that we all shared a Popsicle:

So much for the dislike of sweet things. I guess this is what it is like to have a typical two year old, huh?

So onward we go with the experiment. We know that this may be a passing thing and it could all go away tomorrow but for now this progress is great.

I'll have to forget things more often. Just nothing to do with her TPN or Central Line. Those are still terrifying enough to keep us vigilant and on script. No ad libbing with sterile techniques.....

Children's Check-in

Ellie had another clinic appointment at Children’s today. It was another smashing success for her and for us.

She continues to grow in length (36.5 inches) and weight (13.8 kg/30.25 pounds) and although her weight wasn’t above 14 kg like we had seen at home in recent weeks, it was later in the day than we normally weigh her.

They are happy with her progress (duh, just look at her) but are very happy with her numbers. If you add up the calories she gets from her Elecare and the calories she gets from her solid food, it takes her well past the 50/50 mark between food and TPN.

Things are so good that we have peeled away another night of TPN from her schedule down the three nights each week with four nights of hydration (just a dilute sugar/salt solution).

That’s right, she is off TPN more than she is on it now! Amazing considering she still has an ostomy and we had been waiting to get her reconnected before progressing very far toward weaning.

We will continue to ramp up her food intake as much as we can while keeping her Elecare about the same for now, about 1200 ml every day. Since she eats well for us, the thought is to peel away formula and make her hungrier for real food, which is better for her both short term and long-term.

And on top of that they don't want to see her at clinic again for three months. Christmas time.

Yes, we have more months on the pumps. But we are in a solid routine for TPN and have lived with it since Ellie came home. Besides, we would miss our morning quality time waiting for the pumps to beep:

The highlight of the day was Ellie seeing her surgeon, Dr. Jennings from across the room, running to him and giving him a high five like she had seen him yesterday.

The hospital is still a fun adventure for her. Bringing Karlene along for clinic makes it a lot more fun.

We also got our orders from one of the Short Bowel team about how to handle Ellie and her new cousin Jack who arrived from Ethiopia earlier this month. Since gut bugs are a big deal for us, we wanted to make sure that she was safe to go near him and that he was screened for all of the necessary bugs before we went to Mainee the next time. As it turns out one of the short bowel GI docs is also an African gut bug doctor for a few weeks every year. Her told us that as long as the stool samples were clear and the blood tests for hepatitis were clear (gotta protect that liver) we are good to unite the family. So we wait for the third stool sample to come back as clean as the first two and then we start making plans to introduce Ellie to Baby Jack.

Woohoo!

That means another shot at a boat ride for Ellie:

And her very own algae lab:

Finally, Ellie wants to say happy birthday to her Gramma:

The Hair

Just for the record.
This crazy curly hair

Is this long.

Oh yeah, in the first picture.. she is doing her own charting. Ya know, it gets to a point where you just gotta put these kids to work.


Side note: Jack and his mom arrive TOMORROW from Africa!!!!!!! Or as Ellie says, "baby Jack coming HOME!"

One, Two, Three, Four, Five

Ellie has been learning to count in the last few months, usually regaling us with 'one, two, eight!'.

In the past week she has moved on and now gets to about seven most of the time, and for some reason skips her favorite number EIGHT!

Last night she decided to pair her new counting with a her version of hide and go seek. She brought her laundry hamper into the living room and proceeded to count her way to hiding:

Going, Going......

You can't see me, can you?

Here I am!

This is all great fun and will be until she really decides to hide on us. She is a pretty quiet girl when she is playing by herself so we need to work on getting her to answer to us when we ask.

20 Calories per Ounce

This is the calorie level that we were at in May of last year. We then increased to 25 cal then a few months later we went to 30 cal. She seemed to tolerate the 25 cal, but never really did that well at 30 cal. We had about 4 months of high output that we tried to blame on everything else. But then this February we decreased back to 25 cal and she started to do better. This takes us to this May, and our hospitalization for a GI bug. We were discharged on 20 cal with instructions to increase the calories over the next few weeks.

We never did increase. Ellie’s output was lower than we had seen in half a year, her urine production went way up, we were able to double the rate on her enteral pump and she started to have a real interest in more solid food. We knew she was doing well but we were sure we were going to get our hands slapped at clinic for not increasing.

But, they were so excited by her progress they said don’t change a thing. Our nutritionist said that because Ellie is getting less calories from her formula her body is now making the effort to get what it needs from her solid food. Typical kids move from formula/breast milk to whole milk (18 calories per ounce) at the same time they start to really eat larger amounts of solid food.

This seems to be what Ellie is doing. So now Gib and I have been desperately trying to figure out what and how much a typical child should eat. What seems to work for Ellie is a diet centered around protein and vegetables. She also gets a small amount of carbs and fruit. The only fruit she gets is small amounts of the high fiber fruits and only fresh; bananas, blue berries, blackberries, and her favorite.. strawberries. The only thing we don’t give her much of is dairy; she still does not tolerate it very well. But, snacks are always a struggle; we are always searching for good snacks. If anyone has a good ideas please let us know.

We are very excited by her progress but, almost everyday we want to kick ourselves for not trying this earlier. It is really hard to look back at everything we have had to go through over the past year+, and wonder what we could have avoided by decreasing her calories sooner or by never increasing in the first place.

Live and learn I guess, right? Right?

It is blue berry season here, so here are some shots of our last two trips to the patch.

Ellie and one of the many blue berries she ate that day.

Ellie and Daddy checking out the apples on the way to the patch.

Ellie getting a piggy back ride back to the car.